The Special-Needs Kindergarten Crunch

New York Times
Tue Sep 23, 2008
The Special-Needs Kindergarten Crunch
By Christine Gralow

It’s the third week of pre-school. Kids are still settling in, and many are still crying when their parents drop them off in the morning. During these first weeks of school, pre-school teachers do a lot of waiting and wondering — waiting patiently for the separation tears to end and wondering what fascinating young characters will begin to emerge in this year’s class. My students’ parents, however, are already thinking about next year — they’re worried about getting their kids into kindergarten.
As a pre-school special needs teacher in New York, I’ve learned that the city’s culture of cut-throat competition extends to kindergarten admissions. And from that, an unexpected part of my job has evolved — providing psychological and emotional support to parents as they undertake the daunting task of finding an appropriate placement for their child. Securing a good spot in an oversubscribed New York City kindergarten, whether public or private, is difficult enough for most parents. But for the parents of children with special needs, it is especially challenging.
Last weekend, I had a long conversation with one mom who is already very worried about finding a placement for her child, who has an autism spectrum disorder. Like many Manhattan parents, she’s already calculating what connections she might be able to use and what strings she might be able to pull. She is considering the possibility of either mainstreaming him with some level of special-education support or enrolling him in one of the city’s private, special-needs schools (for which admissions competition is also very tough). It’s frustrating that she has to begin making the call at this point in the pre-K school year, when it’s far too early to tell which kindergarten option will be best for her son. But since many kindergartens have pre-Thanksgiving application deadlines, she has to begin the process now.
I wish I could tell her not to worry, that everything will be O.K. But I can’t. I’ve seen parents of children with autism go through particularly trying battles with school directors and the city’s Department of Education (D.O.E.) officials, often without a good result.
When I first began going through this process with parents, I was shocked. I’ll never forget what David — one of the first autistic pre-school students I taught — and his parents went through. At the time, David was a mild-mannered 5-year-old. I was his pre-K special-ed itinerant teacher (SEIT). David was an early reader, and he was good with numbers and music, but he had a speech delay, displayed overly repetitive play skills and had trouble focusing on one activity at a time. He exhibited few behavioral problems in the classroom, though, thanks to the intensive early intervention behavioral therapy he received. In fact, many of his mainstream peers had bigger behavioral issues. All of David’s teachers found him a pleasure to work with, and we all recommended that he be placed in a mainstream kindergarten class with special education support — or what is known in the special ed field as a team-teaching class. David’s speech skills had thrived in a class with mainstream pre-K peers, and it was vital to his language development that he continue his education in that environment.
After meeting with their local Committee on Special Education David’s parents were given the option of placing him in a public, team-teaching kindergarten class. The class would have one regular teacher and one special education teacher. Sounded good. Until we found out that the kindergarten class would have 31 students — far too many to allow the type of support David would need. It was the best his district had to offer him, but it wasn’t remotely good enough.
David’s dad then stepped up his efforts to get his son into a new, highly-touted Department of Education program designed specifically to mainstream high-functioning autistic students. This program seemed perfect for David. The application and evaluation process was lengthy, but David’s dad navigated it well. A school psychologist observed David in pre-K and determined that he was right for the program. David’s head pre-K teacher and I then spent significant time out of the classroom completing reports for his final application. David’s parents also spent significant time sending letters and patiently rescheduling canceled D.O.E. meetings. David made it to the final interview — a one-on-one evaluation with the program director. He did well. But after all this, the director informed David’s parents that the program did not accept students with speech delays.
Huh? This program had been touted for being an innovative program for autism spectrum students, like David, who should be mainstreamed. But despite all his reading, math and musical talents, and his significant speech progress in pre-K, David was not considered high-functioning enough for the program.
In the end, there was no appropriate public kindergarten option for David. Even the head of his Committee on Special Education acknowledged this. David’s parents made a last minute decision to move out of the city. Had they stayed, the D.O.E. would have been legally required to pay for a private school placement, since they failed to offer David a free, appropriate public education. However, getting the D.O.E. to fulfill such legal obligations requires having the financial means and the legal savvy to hire the right attorney. And so the kids who need services the most — the poor and disavantaged — get them the least. (I directly experienced this when working with a single mom and her autistic son in their East Harlem studio apartment. It’s a story that I’m still too upset about to tell.)
All this is not to say that there are no good public kindergartens in New York City, or no good public kindergarten programs for special needs children. They do exist, and some parents of special-needs kids — those enough lucky to live in one of the city’s coveted public education districts — do find good placements for their kids in well-run team-teaching classrooms, or, when appropriate, in well-run self-contained classrooms. But such placements are few and far between. Even in the coveted districts, I’ve rarely seen an appropriate special-needs kindergarten placement come without a parent struggle.
There are, of course, also several private schools in New York City for autistic children, such as the McCarton School. But at $90,000 per year, clearly, the kid from East Harlem isn’t going to make it. The city’s handful of public and non-profit charter programs for children with autism, such as the P.S. 255 schools in Queens and the New York Center for Autism Charter School, clearly need to be expanded and replicated, and those working to make such programs succeed should be applauded.
As for David, luckily, he ended up in a good kindergarten class in another town. He has just begun first grade, and he’s doing well. But needless to say, parents of children with autism should not have to move out of the city at the last minute to enroll their kids in a decent program. I really hope the mom I’m working with now has an easier time.

Free training to families of children with developmental disabilities

The Long Island Developmental Disabilities Service Office has awarded our Foundation funds to provide training to families of children with developmental disabilities residing in Nassau and Suffolk County. Each interested family will be provided with six hours of individual training to address challenges they face within home and community settings.

The training will be either provided by or overseen by a Board Certified Behavior Analyst. The training can take place either in the home or at a place within the family’s community.

If you know of a family that could benefit from this service, please forward to them our contact information. We have several openings for this fall.

We have resources for a limited number of families. Families will be accepted into the program on a first come first serve basis.


Thank you,
Cathy Hoffman
Administrator
Down Syndrome Advocacy Foundation
516-983-7008
dsaf2@optonline.net

KULANU CATCHES A WAVE WITH SURFER'S HEALING

On Wednesday, September 10th, children with
special needs from Kulanu’s recreational program
traveled to Long Beach for a unique and exhilarating
experience with Surfer’s Healing.
Surfer’s Healing enriches the lives of children with
Autism Spectrum Disorder (ASD)and their families by
exposing them to the unique experience of surfing.
Surfer’s Healing turns the ocean surf into a
positive and therapeutic activity for these children.
In our work with children with special needs, Kulanu
joins with many new and innovative programs to provide
activities that are inclusive, social, and fun for children
and their families.
For more information about this and other Kulanu
programs, contact Melissa Sornik at 516 569-6664.

Bypassing the Roadblocks of Autism

By JANE MARGOLIES
Published: September 14, 2008

WHEN Victoria Berrey took a cruise with her mother and sister three years ago, she returned to her home in Santa Clarita, Calif., with one regret: She’d never be able to do a trip like it with her own children, both of whom have autism. “I worried about the confined quarters and the need for the boys to sit still in the dining room,” said Mrs. Berrey, whose older son, Miles, now 12, is on a restricted diet, and whose younger boy, Mathew, 8, has difficulty with any disruptions in routine. “Where would I take Mathew if something happened and he started yelling? What if one of them fell overboard?”
But last March Mrs. Berrey and her sons did enjoy a cruise, a three-day sail on a Royal Caribbean liner with special arrangements for people who have autism. At boarding, the 11 families who had booked the Autism on the Seas package through Alumni Cruises didn’t have to wait in line, and they were able to do the muster call in a private conference room rather than crowd on deck with the thousands of other passengers.
The group sat together at meals, so when one of the kids got antsy or let out a holler, there were no stares or glares or why-can’t-you-control-your-child lectures. Mrs. Berrey was even able to drop off her boys at the kids’ club where the staff had been specially prepped. “I got to experience what other parents experience all the time,” she said.
For most people, family vacations amount to almost a right. But for those grappling with autism — a brain disorder that affects one in 150 children and is four times more likely to afflict boys than girls, according to the Centers for Disease Control and Prevention — travel is a trickier proposition.
The 1.5 million Americans diagnosed with autism, also known as autism spectrum disorder or pervasive developmental disorder, have impaired abilities to communicate and interact socially, with cases ranging from those who cannot speak and live largely cut off from the world around them to highly functioning individuals who can express themselves extremely well, though they might have trouble with back-and-forth conversation; many have narrowly focused interests (an obsession with fans or train timetables, for example), or display unusual behaviors like the repetition of just-heard words, or the avoidance of eye contact or of being touched.
Yet for every parent who decides they’re better off staying at home with a child who might have a meltdown if someone accidentally brushes against him at a hotel breakfast buffet, there are others who are determined to hit the road, particularly if there are nonautistic siblings in the equation. And with Americans who have disabilities spending $13.6 billion annually on travel in the United States (not including the caregivers and family members who often accompany such individuals), according to a 2005 Harris Interactive poll for the Open Doors Organization, a small but growing number of tour operators, travel agents and resorts are offering specially geared getaways.
The Autism on the Seas trips from Alumni Cruises, a booking agency in Shelton, Conn., have tripled the last two years, far outpacing the company’s beading- and home school-themed voyages and now accounting for almost half its revenue. Adam’s Camp, a Colorado organization that provides camp-style sessions at Snow Mountain Ranch, in Granby, for children with disabilities and their families, added a fifth week this year and is considering a sixth because of the increased demand from the families of children with autism. It has also begun a program on Nantucket and hopes to add additional sites.
At Smugglers’ Notch Resort in Vermont, three-quarters of the participants in a program for people with special needs are autistic, and that number increases every year, according to Kris Connolly, manager of adaptive programs at the resort, who will provide one-on-one care if required, or steer a child with autism to a group of kids who are the same developmental, as opposed to chronological, age. “We might spend an extra 20 minutes at the pool if the water is calming to a child, or he enjoys the feeling of buoyancy,” she said. “If we see real enjoyment at the swing set, that’s where we’ll take extra time.”
And while hotels and resorts have focused on accommodating guests with physical handicaps since the enactment of the Americans With Disabilities Act in 1990, according to Scott Berman, a hospitality and leisure analyst at PricewaterhouseCoopers, the 300-hotel chain Microtel Inns & Suites, which has won awards from disability-rights organizations for going above and beyond the requirements of the law to welcome guests with physical differences, includes discussions of hidden disabilities like autism in staff training.
“There’s been a sea change in terms of awareness,” said Marguerite Colston, spokeswomen for the Autism Society of America, who credits celebrities like the former Miami Dolphins quarterback Dan Marino and the actress Jenny McCarthy, who have spoken out on behalf of their own children and those like them, with helping spread the word. “It used to be that when people heard the word autism, they thought ‘Rain Man,’ ” Ms. Colston said, referring to the 1988 movie in which Dustin Hoffman plays an institutionalized autistic savant. “Now they realize there’s a broader range.” And with more and more children being diagnosed with autism — now the fastest-growing developmental disability in America, according to the society — “it’s much more likely that any given person will know someone with autism,” she said.
All of which is not to suggest that vacations with an autistic child are easy. The very idea of travel — the chance to see new places, try new foods, experience new cultures — is directly at odds with the needs of many people with autism, who require well-established, strictly observed routines to feel secure.
And while the airport experience since 9/11 has become much more trying to all of us, it can be extremely challenging for someone who has inherent difficulty waiting or standing in line, not to mention answering questions posed by a security guard. “If a guard asks, ‘Did you pack your own bag?’ someone with autism might repeat the question, or just repeat the word, ‘bag,’ ” said Dr. Melissa Nishawala, director of the Autism Spectrum Disorders Service at the New York University Child Study Center. “The child might read ‘dangerous explosives’ on a sign somewhere in the airport and start repeating those words. Loudly. In line.”
Then there is the plane ride itself. “By the time they get on the plane, the parents and the child are stressed out,” said Dr. Ron Balamuth, a New York psychologist who specializes in working with children who have developmental disorders. “For a kid who needs constant stimulation, that’s like putting him in a flotation tank.”
In June, a mother and her young autistic son were kicked off an American Eagle flight departing from Raleigh-Durham in part because of the child’s behavior. An item about the incident on the Chicago Tribune’s blog drew 221 posts by the end of the day — almost twice as many in support of the airline as sympathetic to the family.
Parents who travel with autistic offspring employ many strategies. They pick destinations that will appeal: a resort with a pool if the child loves water, or Disney World if he has a fixation with “The Lion King.” They role play with their child before departure to prepare for the experience. “I had a family with a child who had tremendous difficulty waiting in lines, waiting for anything,” said Dr. Balamuth. “They turned their house into a flight gate. The family lined up with suitcases, they took off their shoes, they play acted the whole thing.”
Itineraries, even daily schedules, reviewed in advance help autistic travelers know what is going to take place, and when. “If a child can read, it’s words on a page; if not, it’s pictures,” said Lisa Goring, director of family services for Autism Speaks, an advocacy group. With her own son, Andrew, 12, Mrs. Goring ticks off activities as they occur. “He’s anxious if he doesn’t know when an activity will end,” she said.
Parents carry a letter from their child’s doctor explaining the condition (to whip out at the airport or to present at guest relations at Disney World, where it can secure a pass to circumvent long lines). They take along familiar toys and a DVD player so favorite movies can be watched en route. And if the child is on a gluten-free, casein-free diet (thought to relieve allergies and other medical ailments that might be distracting to someone with autism), they cart along a lot of food, too.
If parents find a destination that works for their child, they often return. Anthony and Felicia Cerabone of Staten Island bought a timeshare at Smugglers’ Notch, where their son, Anthony, 15, has participated in the resort’s SNAP program for people with special needs for 10 years. “He knows that every July we go,” said Mrs. Cerabone. “He knows that every day he goes to the camp. By now it’s routine.”
Gina Delgiudice-Asch, a rheumatologist, and her husband, Will, a high-school math teacher, from Princeton, N.J., have managed to range farther afield with their two children, even though their son, Andrew, 16, has autism, Dr. Delgiudice-Asch said from Avalon, N.J., where the family rented a house at the shore for a week at the end of June.
Sometimes she or her husband will take a one-on-one trip with their 13-year-old daughter, Samantha, a nationally ranked junior tennis player — on a recent jaunt to Los Angeles, mother and daughter visited the set for “Ocean’s Thirteen” and ducked in and out of shops on Rodeo Drive. “With Andrew, everything has to be more planned,” said Mrs. Delgiudice-Asch.
But often the family travels as a pack, taking along a familiar babysitter or a teacher from Andrew’s school to help. They have vacationed everywhere from Winter Park, Colo., where instructors at the National Sports Center for the Disabled had Andrew on skis four hours a day, to Costa Rica. “It was hard when we got to the resort, and they didn’t have a grilled cheese for him right away,” Dr. Delgiudice-Asch acknowledged. “But he got the hang of it.”
They go to family-oriented resorts rather than exclusive places where “we might be impinging on other people’s vacation,” she said. And they stick to coach after a bad experience flying first class from California to Cabo San Lucas, Mexico, when Andrew, who was 6 at the time, started crying and a passenger complained to the flight attendant.
Though they’d like to see Europe, they haven’t gone as a family. That’s not because Andrew, by now a seasoned traveler, couldn’t handle the flight, but because he would have too much difficulty with the time difference, his mother said. “But we’re still doing fun things on vacation as a family,” she said. “We’re not letting autism back us into a corner.”

The Bipolar Puzzle

By JENNIFER EGAN
Published: September 12, 2008

When Claire, a pixie-faced 6-year-old in a school uniform, heard her older brother, James, enter the family’s Manhattan apartment, she shut her bedroom door and began barricading it so swiftly and methodically that at first I didn’t understand what she was doing. She slid a basket of toys in front of the closed door, then added a wagon and a stroller laden with dolls. She hugged a small stuffed Pegasus to her chest. “Pega always protects me,” she said softly. “Pega, guard the door.”
James, then 10, had been given a diagnosis of bipolar disorder two years earlier. He was attending a therapeutic day school in another borough and riding more than an hour each way on a school bus, so he came home after Claire. Until James’s arrival that April afternoon, Claire was showing me sketches she had drawn of her Uglydolls and chatting about the Web site JibJab, where she likes to watch goofy videos. At the sound of James’s footsteps outside her bedroom door, she flattened herself behind the barricade. There was a sharp knock. After a few seconds, James’s angry, wounded voice barked, “Forget it,” and the steps retreated.
“If it’s my brother, I don’t open it,” Claire said. “I don’t care if I’m being mean. . . . I never trust him. James always jumps out and scares me. He surprises me in a bad way.”
I left Claire’s bedroom and found James with his mother, Mary, in their spacious living room, which has a sidelong view of the Hudson River. James is a fair, athletic-looking boy with a commanding voice and a restless, edgy gait. He began reading aloud a story he wrote at school called “The Mystery of My Little Sister.” It involved James discovering Claire almost dead, rescuing her and forming a detective agency to track down her assailant. He read haltingly, often interrupting himself. When his mother asked a question, the roil of frustration that nearly always seethes just under James’s surface, even when he is happy, sloshed over.
“If you listened on the first page, it says it!” he scolded her, then collapsed hopelessly beside the coffee table. “You don’t get anything. Now I lost my place. Forget it. I give up.” He crossed his arms on the table and rested his head in them. Mary waited quietly in her chair. Sure enough, a minute or two later James began reading us a list he had concocted of 50 ways to get rich. The next time his mother spoke, he bellowed: “I wasn’t talking to you! I’m not reading it now!” He threw the paper down and stalked out of the room.
The baby-sitter arrived, a 27-year-old preschool teacher whom Mary hired to come in a few hours each week and help maintain harmony when both her children were home. It wasn’t easy. There was a basic rhythmic pattern to the afternoon: James reached out, craving attention and engagement, then stormed away in roaring frustration only to return, penitent and eager to connect, cuddling and hanging on to his mother in a way unusual for a boy his age.
At one point Claire appeared in the next room, and James hurled a ball at her, missing. Claire shrieked as if she’d been hit, screaming, “What did you do that for?”
“Wow, I’m scared,” James said. “I’m scared, right, Claire?” He threw the ball at her again, then asked, “Want to have family time?”
“No,” Claire hollered. “I want James to get away from me. Get away!”
James made a series of loud, taunting sounds, which induced more hysterical cries from Claire. “James, you’re provoking,” Mary said evenly. “Claire, you’re overreacting.”
Claire rode out of the room in her wagon. James sat with his stockinged feet in his mother’s lap and played his Nintendo DS, though it rarely held his attention for more than a few minutes.
“The therapist says that Claire is in crisis,” Mary told me, referring to a social worker the family sees twice each week. “James is feeling better, James is feeling happier, so Claire, who has always been easy, is letting it all out now.”
James has never been easy. Like many children whose emotional problems are being diagnosed as bipolar disorder, his main symptoms are aggression and explosive rage (known in clinical parlance as “irritability”), and those traits have been visible in James from the time he was a toddler. Fifteen years ago his condition would probably not have been called bipolar disorder, and some doctors might hesitate to diagnose it in him even now, preferring other labels that more directly address James’s rage and aggression: Oppositional Defiant Disorder (O.D.D.) or Attention Deficit Hyperactivity Disorder (A.D.H.D.) — both of which have been applied to James as well. But since the mid-1990s, a revolution has occurred in the field of child psychiatry, and a mental illness characterized by episodes of mania and depression (bipolar disorder used to be called “manic depression”), which once was believed not to exist before late adolescence, is now being ascribed rather freely to children with mood problems, sometimes at very young ages.
The Diagnostic and Statistical Manual of Mental Disorders (the current edition is referred to as D.S.M.-IV) describes bipolar disorder as a condition whose average age of onset is 20, but virtually all the leaders in the field now say they believe it exists in children too. What they don’t agree on is what, exactly, characterizes the disease in kids, or how prevalent it is; some call it rare, while others say it is common. Many clinicians say the illness looks significantly different in children than in adults, but the question of how it differs, or what diagnostic terms like “grandiosity,” “elevated mood” or “flight of ideas” (all potential symptoms of adult bipolar disorder) even mean when you’re talking about kids, leaves room for interpretation. For example, it’s normal for children to pretend that they are superheroes, or believe that they can run faster than cars, whereas in an adult, these convictions would be signs of grandiosity. Equally unclear is whether a child who is identified as having a bipolar disorder will grow up to be a bipolar adult. Work on the D.S.M.-V is under way, and discussions have begun on how to address the issue of bipolar children.
As Ellen Leibenluft, who runs the pediatric bipolar-research program at the National Institute of Mental Health, told me, “There definitely will be — and needs to be — more description of what bipolar disorder looks like in children, how one diagnoses it and some of the challenges.”
According to Mary, James was excessively cranky and active from babyhood (except where otherwise noted, the names of patients and their families used in this story are middle names). “By 7:30 every morning, I’d be in the playground with him,” she said. “If it was over 20 degrees I was out the door, because if he was inside, he would rage.” Still, James seemed at first to thrive in preschool. “I said: ‘O.K., this is my problem, not his problem. This is my parenting skills, my lack of discipline, my lack of structure.’ However, when I would pick him up from school he would scream and cry and rant and rage, sometimes remove his clothes, it would take me half an hour to get him out of the vestibule. I’d have to literally tie him in the stroller. He was 3. People were absolutely horrified.”
When James was 4 and Claire was a newborn, his pre-school contacted Mary in the fall and told her that her son seemed hyperactive and aggressive. After three days of testing, a developmental pediatrician diagnosed his condition as Oppositional Defiant Disorder, and prescribed Zoloft, an antidepressant. “We refused to give a 4 1/2-year-old Zoloft,” Mary said. They limped through the rest of the year, but in order for James to remain at the school for another year, they had to promise to hire a “shadow” — someone to be with James full time in the classroom — at a cost of $20,000 a year. Mary and her husband are affluent enough to afford this (her husband, Frank, has his own business; Mary hasn’t worked since James was born); otherwise, James would have had to leave the school.
Meanwhile, life at home was devolving into a nightmare. “James used to wake up every morning violently angry,” Mary said. “I used to wake up at 4:30 and heat his milk in his sippy cup so that when he woke up at 5:00 it would be exactly the right temperature. If it was too hot or too cold, he would take one sip from the cup, hurl it across the room and rage so loudly that it would wake Claire up, so that at three minutes after 5:00, I would be crying, Claire would be crying and my husband would be crying.”
She and her husband took James to a pediatric psychopharmacologist, who prescribed Risperdal, one of a new generation of antipsychotic drugs that have become popular for treating children with rage and aggression because it can blunt their anger and calm them down. These so-called atypical antipsychotics are less likely to cause abnormal movements and muscle stiffness than the earlier antipsychotics, but they can still prompt enormous weight gain and put children at risk for diabetes. Since James was underweight and oblivious to food, Mary and her husband were willing to take the risk.
“So we give him the Risperdal drops before bed, and he wakes up the next morning and he says: ‘Good morning, Mommy. I’m hungry. Could I have something to eat?’ I wake my husband and I say: ‘James is different. The medication is working.’ That day at noon, the Risperdal wore off, and he became angry, miserable, mean, frightening — everything he was before.”
But even with Risperdal and a shadow, James struggled in his second year of pre-K; with his anger under control, his attention problems became more visible. “He could not stay on tasks,” Mary said. “He couldn’t stick with anything. He’d go to the drawing table and make one scribble. . . . He was hopping around.” James’s condition was diagnosed as Attention Deficit Hyperactivity Disorder, a problem that is said to afflict between 3 and 7 percent of American schoolchildren. Normally A.D.H.D. is treated with stimulants like Ritalin, which can temporarily improve focus, but the two stimulants his doctor tried made James nasty and angrier, and he couldn’t stay on them. In first grade he moved to a school for children with special learning needs, but by second grade he was having trouble even there. “He would cry every morning, and cry and cry and cry,” Mary said. “I now realize that that was depression.”
Home life was almost unbearable. “I couldn’t bring them to a playground together, because if he got behind Claire on the slide, he would push her down. If she walked by, he put out his leg to trip her. If they were watching TV and he became overstimulated, he would kick and punch her. . . . There’s never been a dinner hour; he’d push her plate. He didn’t like the way she was chewing. He’d rage. We never had any family meals. No family trips. Ever.”
As often happens with children on psychotropic drugs, James’s behavior began to “break through” the medication, requiring more and eventually different combinations of drugs to contain it. Along with the Risperdal, he eventually went on Depakote, one of several antiseizure drugs that are also used as mood stabilizers. Depakote was ultimately replaced with Lamictal, another antiseizure drug, and the Risperdal gave way to Abilify, another antipsychotic.
In spring of third grade, Mary was walking James and Claire home from James’s school when he demanded a lottery ticket. She refused to buy him one. “He started to scream and yell and rant and rave on a busy corner. We were crossing the street and the light was changing. Coming down 75th Street I saw this big white Hummer. James said to me as we were crossing the street, ‘If you won’t buy me a lottery ticket, I don’t want to live.’ He stood in the middle of the street and he faced the Hummer down. And the Hummer pulls over and the guy gets out and starts screaming.” At the psychiatrist’s office the next day, “James is speaking really fast and he’s mounting my leg like he’s in sexual overdrive,” Mary recalled. Pressured speech and hypersexuality are symptoms of mania. Shortly thereafter, when James was 8, his condition was diagnosed as bipolar disorder.
Later on the April afternoon I spent in their apartment, Claire was on the family computer visiting her favorite Web site, JibJab, when James came over and stood beside her. “Can I start it over, please?” he said.
“That’s nice asking, James,” Mary said. Claire replayed the video, and the children laughed, watching it together. A few minutes later, Claire came to her mother on the couch and put her arms around Mary’s neck. James followed, draping himself across his mother’s legs. Mary mentioned that she was concerned about some of the language she’d just heard on the video and mused aloud over whether to adjust the Internet filter to block JibJab out. “Mommy, please keep that one,” Claire implored. “That’s the only one James and I watch.” When Mary relented, the children cheered, seizing each other’s hands in a rare show of unity. A moment later, Claire, still giggling, said, “Ow.” James had pushed or hurt her somehow. “Ow, ow!” she cried, in real pain now.
“That hurts her, James,” Mary said.
“Get away,” Claire screamed. “Now!”
The children began to roar at each other. Mary took charge: “Don’t hit. Let’s separate our bodies.” Then, almost with surprise, she said, “We were having a nice moment.”
Last fall, James started fifth grade at a school designed to accommodate emotional as well as learning issues. It has a contract with the New York City Department of Education, which means that city children attend free as long as the D.O.E. deems them in need of its services. The first parent conference, last fall, was sobering for Mary and her husband; the combination of A.D.H.D. and anger was making it hard for James to function even in this new school. “He can’t start, he can’t stop,” she paraphrased. “He can’t sit in his seat. He can’t stop interrupting. He’s constantly provoking his classmates. He’s basically barely teachable. . . . It was like someone punched me in the side of the jaw.” Mary went to James’s psychiatrist for help. “I thought I was finally going to walk away with Ritalin,” she said. “Instead, we walked out of that office with lithium.”
Lithium is one of the oldest and most reliable mood stabilizers, but it’s a serious and potentially toxic drug, requiring regular blood draws to make sure that it isn’t becoming too concentrated. It can have unpleasant side effects: tremors, weight gain, acne and thyroid problems in the short term; kidney damage in the long run. But Mary and her husband felt they had little choice. And the lithium, which James took along with his other medication, helped. James settled down in his new school and began to learn, and even to make friends. He was happier. At which point Claire, perhaps in a delayed reaction to trauma dating back to when she was small, became hysterically intolerant of her brother. “The latest edict from the therapist is that Claire’s allowed to take her food and go in the TV room and eat by herself,” Mary said. “And now she’s eating three meals a day in there.”
James’s psychiatrist was planning to raise his lithium dose until he was fully stable, and then to try adding a stimulant to help with his A.D.H.D., so he could concentrate better in school. Mary’s hopes were riding heavily on this plan; lately, James’s psychiatrist had been floating the idea of a residential school for James as a possible solution to his learning issues and conflicts with Claire. Mary and her husband badly wanted to keep him at home.
“I used to cry five times a day, and now maybe I only cry once or twice,” she told me, her usual upbeat practicality briefly giving way to emotion. “So it’s better, you know? It’s better now that I don’t pick him up at school, and he doesn’t rage at me in front of all the other parents. He can rage when he bursts in the door, so no one sees how awful it is. It’s like a dirty little secret. It’s like having a husband who beats you, only it’s a kid. It’s your own.”
A study last fall measured a fortyfold increase in the number of doctor visits between 1994 and 2003 by children and adolescents said to have bipolar disorder, and the number has likely risen further. Most doctors I spoke with found the “fortyfold increase” misleading, since the number of bipolar kids at the beginning of the study was virtually zero and by the end of the study amounted to fewer than 7 percent of all mental-health disorders identified in children. Many also said that because bipolar children are often severely ill, they can proportionately account for more doctors’ visits than children with other psychiatric complaints, like A.D.H.D. or Anxiety Disorder. Still, nearly every clinician I spoke to said that bipolar illness is being overdiagnosed in kids. In Leibenluft’s studies at the National Institute of Mental Health, only 20 percent of children identified with bipolar disorder are found to meet the strict criteria for the disease. Breck Borcherding, a pediatric psychiatrist in private practice in the Washington area, said: “Every time one of my kids goes into the hospital, they come out with a bipolar diagnosis. It’s very frustrating.”
There are many possible reasons for the sudden frenzy of pediatric bipolar diagnoses. First, a critical shortage of child psychiatrists, especially in rural areas, means that many children are being seen by adult psychiatrists or — more often — by family doctors, who may lack expertise in child psychiatry. Managed care usually pays for a single, brief psychiatric evaluation (and it strictly limits the number of therapy appointments a year) — not nearly enough time, many say, to accurately diagnose a condition in a mentally ill child.
Then there is “The Bipolar Child,” a successful book published by the psychiatrist Demitri Papolos and his wife, Janice, in 1999, and referred to by more than one parent I spoke to as a “bible.” The Papoloses’ description of pediatric bipolar disorder was amassed partly by using responses to an online questionnaire filled out by hundreds of parents on an electronic mailing list, who said they believed their children were bipolar (and who often had strong family histories of the disease). The Papoloses’ diagnostic criteria include some idiosyncratic items — a severe craving for carbohydrates, for example — that are found nowhere in D.S.M.-IV. Nevertheless, many parents walk into doctors’ offices having already read “The Bipolar Child” and concluded that their children are bipolar. Because doctors rely heavily on parental reports when diagnosing disorders in children, these “prediagnoses” may have an impact on the outcome.
And of course, there are pressures and blandishments from the pharmaceutical industry, which stands to profit mightily from the expensive drugs — often used in combination — that are prescribed for bipolar illness, despite the fact that very few of these drugs have been approved for use in children.
For all the possible overdiagnosing of pediatric bipolar disorder, however, many in the field also say that a lot of truly bipolar children who could benefit from therapy are falling through the cracks. This is a critical issue; studies clearly show that the longer bipolar disorder goes untreated, the worse a person’s long-term prognosis. Between 10 and 15 percent of those suffering from bipolar disorder end up committing suicide.
Some studies suggest that bipolar disorder may actually be on the rise among young people. One intriguing hypothesis involves a genetic phenomenon known as “anticipation,” in which genes become more concentrated over generations, bringing a stronger form and earlier onset of an illness with each successive generation. Another theory is “assortative mating,” in which a more mobile and fluid society, like ours, enables the coupling of people whose mutual attraction might be partly due to a shared genetic disposition to something like bipolar disorder, thus concentrating the genetic load in their offspring.
Given these uncertainties, how does a doctor go about diagnosing bipolar disorder in a child? To understand that process, I spent several days at the Child and Adolescent Bipolar Services Clinic at the Western Psychiatric Institute and Clinic of the University of Pittsburgh Medical Center, the largest clinic in America devoted specifically to treating and studying children with bipolar disorder. It has about 260 active patients, most of them from Pennsylvania, eastern Ohio and West Virginia, and it evaluates between one and five new cases each week. It accepts managed care, meaning it operates at a loss, which is absorbed by the medical center. (Many child psychiatrists in private practice, who charge as much as $400 an hour in New York, accept no insurance; families who can afford to lay out these sums must collect what they can from their insurers after the fact.)
The three evaluations I watched consisted of what are called semistructured interviews of parents and children, separately and together, by an experienced nurse or social worker, to collect the child’s psychiatric history and determine which symptoms of mania or depression are present (parents are prescreened by phone to rule out cases that are clearly not bipolar, a process that eliminates roughly 50 percent of callers). Parents and child then have a lengthy meeting with either Boris Birmaher, who founded the clinic 10 years ago, David Axelson, its current director, or one of two other psychiatrists.
The first two evaluations I saw were of teenagers, a boy and a girl; the doctors felt they seemed depressed, not bipolar, and directed them to a clinic in the same building that caters to depressed teenagers. The third evaluation was of a 7-year-old boy named Joe (his first name): a burly, sweet-faced kid with long eyelashes and dark curls. He appeared quite depressed, leaning his head on the armrest of his chair and answering yes or no in a mournful monotone. His mother and grandmother described a child who sounded a lot like James — restless and overactive from birth, impulsive, requiring constant attention, but above all, wildly, explosively angry. His mother recalled tantrums lasting hours; a recent one, which took place in Wal-Mart when she refused to buy him a video game, resulted in her having to sit on Joe in an aisle until store employees could help her wrestle him into the car. Like James’s, Joe’s condition was diagnosed as O.D.D. and A.D.H.D. and he had taken various medications since age 4, including stimulants and antipsychotics, none of which really helped. A recent rampage at school concluded with a 20-minute physical fight with a police officer; Joe was suspended, and if his mother hadn’t been able to get there and calm him down, he probably would have landed in a psychiatric hospital.
His mother, who had Joe at 19 and is single, working the overnight shift at a group home for the mentally disabled, spoke through a frequent rattling cough. “He tells me he hates me every day,” she said. “He says he hates himself, and he wants to die. I don’t enjoy being around him. When I’m restraining him, he kicks me, punches me and spits in my face, bites me. Sometimes I don’t ride in the car with him, because I just don’t know what he’s going to do: if he’s gonna open the door, if he’s gonna reach around and punch me, grab the wheel.”
After several hours of interviews, Axelson told Joe’s mother and grandmother: “What is clear is that Joe is having mood difficulties. Whether that’s related to a depressive disorder or a bipolar disorder is hard to tell. I know that’s frustrating.”
What Axelson wasn’t seeing in Joe was clear evidence of mania, defined in D.S.M.-IV as a distinct period of an abnormally elevated (meaning euphoric) or irritable mood, accompanied by at least three out of seven other symptoms (four symptoms, if the mood is irritable rather than elevated). Those seven symptoms are captured with the mnemonic Digfast: distractibility, indiscretion (“excessive involvement in pleasurable activities” in D.S.M.), grandiosity, flight of ideas, activity increase, sleep deficit (“decreased need for sleep”) and talkativeness (“pressured speech”).
“I’m not seeing clear patterns of distinct periods of being accelerated and talking and moving and thinking with an intensity of mood that just overflows and then goes back to his usual state,” Axelson said. “The intense anger outbursts can happen in kids with bipolar disorder, but they can happen with other mood disorders, or with A.D.H.D. and severe oppositional behavior. He’s only 7 years old. This could be the very early signs of bipolar, and it may not be until two, three, four, five years from now that we’d have a clear idea. That doesn’t mean that he doesn’t need intensive treatment — he really does.” (Joe is currently in treatment at the Western Psychiatric Institute and Clinic, but the right medication has proved elusive.)
It’s possible that a different doctor might have identified Joe as bipolar. In an influential 1995 paper that began the paradigm shift toward bipolar disorder within child psychiatry, Janet Wozniak — the director of the pediatric bipolar-disorder program at Massachusetts General Hospital and co-author of “Is Your Child Bipolar?” — working with the chief of pediatric psychopharmacology, Joseph Biederman, revealed that 16 percent of the children who came to the clinic met the D.S.M. criteria for mania. This was shocking news; it was widely believed until then that mania in children was extremely rare. Wozniak reported that the children’s mania most often took the form of an irritable mood rather than an elevated one, and that the mood was often chronic: the norm, rather than the exception. All but one of the manic children in the study also suffered from A.D.H.D.
Wozniak told me that the discovery of mania in so many of the kids she was treating came as a shock to her too. “It was like I opened up my eyes: Oh, my goodness, these children have bipolar disorder,” she said. “And I realized that what I’d been treating them for hadn’t been working well. I was often treating them for bad A.D.H.D., using different stimulant medicines or higher doses. I was often treating them for their depression and not getting anywhere. In those days, the teaching was that we had a group of medicines that could be used for ‘aggression’ in children. What’s interesting is that these were the anti-manic agents; they were lithium and antiseizure medicines.” In other words, many of the children in Wozniak’s clinic went unrecognized as bipolar, but they were inadvertently being treated for bipolar.
The tricky part, diagnostically, is that out of those seven symptoms, three — distractibility, activity increase and talkativeness — are also symptoms of A.D.H.D. Which means that a severely irritable child who has A.D.H.D. could be, theoretically, only one symptom away from a bipolar diagnosis.
Does it even matter whether or not we call Joe or James bipolar, since the drugs used to treat irritable, aggressive children are often the same as those used for bipolar disorder? Critics of the more widespread use of a pediatric bipolar diagnosis say it does. For one thing, being bipolar makes certain medications extremely risky to use; stimulants can intensify a manic episode, and antidepressants like Zoloft or Prozac can make bipolar patients not just manic but psychotic, even suicidal. In fact, some clinicians say that a number of young patients who become suicidal while on antidepressants — occasioning the “black box” warning currently mandated for drugs like Prozac — in fact suffer from undiagnosed bipolar disorder.
Gabrielle Carlson, the director of child and adolescent psychiatry at the Stony Brook University School of Medicine, has studied childhood mania for many years and says bipolar disorder is uncommon in children under 10, revealing itself in the same discrete episodes of mania and depression that we see in bipolar adults — not in chronic irritability. According to Carlson, a large group of aggressive and explosive children, who in fact are “diagnostically homeless,” are being relabeled as bipolar, which is a development she says is unhelpful both to the children and the field. “Diagnostically it ends up being a very important consideration of what the kid really has,” she told me. “If he really has A.D.H.D. and it’s not mania, then you give him medication for his A.D.H.D. You also give him behavior modification.” One patient she saw that day, who was thought to have bipolar disorder, actually had autism, she said. “If you say, ‘Hey, his problem is bipolar disorder,’ then you’re not going to treat his language disorder, you’re not going to give the social-skills treatment he needs,” she said. Problematic conditions in a child’s home life are also less likely to be addressed if the child’s behavioral issues are attributed to bipolar disorder, Carlson said. “Many people, when they hear bipolar disorder, their brain slams shut.”
Afternoons at the Pittsburgh bipolar clinic are the time when ongoing patients come in for shorter appointments to assess the impact of their medication regimes on their mood and check for side effects. On my visit in March, Axelson’s last appointment of the day was with a pair of bipolar siblings: Phia, 9, and Lucas, 6, both of whom he had been treating for the last year and a half. They were a dynamic and appealing pair, if slightly overcharged; there was constant climbing and prowling in the small office. Phia, who wore a pink sweater, black cords and red wool-lined Crocs, had begun taking lithium just a few weeks before, after two different antipsychotic drugs produced an uncomfortable muscular sensation in her legs called akathesia. Now that she was on lithium and a lower dose of one of the antipsychotics, the akathesia had stopped, and both Phia (a family nickname) and her mother, Marie, agreed she was doing well. On the other hand, Lucas, a vigorous, bullet-headed boy who that day wore camouflage pants, was behaving oddly, Marie said. “Throughout the course of a day, there’s a shift from a whole lot of bravado to limp,” she told Axelson.
“Tell me what Lucas is like at the bravado times,” he said.
“We went to church, and what he had strong feelings about wearing was a glittery lamé vest on top of a striped shirt and a top hat.”
Axelson leaned toward Lucas in amazement. “A top hat!” he said. “Do you normally wear a top hat to church?”
The nurse found a pretext to take the children out of the room so that Axelson could question Marie further. “Is he talking differently when he’s in the top-hat kind of mood?”
“There’s no inhibition,” she said. “He’ll just run up to people on the street or in stores, go right up and start talking to them. He’ll say, ‘Hi,’ and tell them something that went on in his life in the morning; it could be his breakfast, it could be his Webkin. They may not even be paying attention to him, but he’ll persist.”
“Is he physically moving around more when he’s in that kind of mood?” Axelson asked.
“Yes, like touching the stove top, touching everything. But in a reckless way, where things are getting pushed off the counter and dropping and breaking. He thinks that he doesn’t need to wear a shirt outside. You obviously tell him, ‘You have to wear a coat, it’s 32 degrees,’ and he’ll have a fit. I end up carrying him upstairs to try to get him in a timeout to calm him, and I’ll hold him. And after that, it’s like the bottom drops. He gets limp. He’ll say: ‘I’m sad. It’s the kind of sad that isn’t for a reason.’ Or he’ll say, ‘Things aren’t right.’ ”
Axelson decided to increase Lucas’s Abilify dose but warned Marie that he wouldn’t be able to go much higher. If the manic symptoms persisted, they might need to consider lithium — not ideal for a child so young and something both Axelson and Marie said they hoped to avoid.
Later I asked Axelson what struck him as manic about the behavior Marie described in Lucas. “What would mania look like in a 6-year-old?” he asked. “They can’t have sex with strangers, max out their credit card or start new business ventures. But he can dress outlandishly, talk to strangers.” Lucas’s behavior also harked back to some of his premedication symptoms, which included grabbing strangers’ cellphones out of their pockets and trying to touch the guns of police officers. He’d slathered shaving cream on the furniture and drawn all over the walls. Then there were days when Marie couldn’t get him off the couch. He had difficulty connecting to other children; after two years of preschool he had never been invited on a play date.
Axelson’s diagnoses of Lucas’s and Phia’s disorders were abetted by the fact that Marie and her husband are both bipolar, too. There is clear evidence that the disorder runs in families; a recent study shows that children with even one bipolar parent are 13 times as likely to develop the disease. Marie, an artist, learned she was bipolar only recently, having been treated for many years for depression. Once her children were successfully in treatment, she told me, she was able to perceive how mentally uncomfortable she herself was. A psychiatrist, looking carefully at her history, determined that in her 20s, which Marie had thought were simply “awash in bad judgment,” she actually suffered from bouts of mania. The new diagnosis had prompted different medications, which she said had helped her enormously.
Marie’s history illustrates a trend toward a more inclusive definition of adult bipolar illness; little noted in the study that reported on the fortyfold increase in child and adolescent bipolar doctor visits was the fact that the number of adult visits had roughly doubled during the same period. This increase jibes with a recent population survey estimating the prevalence of bipolar disorder among American adults, long thought to be around 1 percent, at slightly more than 2 percent. The survey also projected that another 2.4 percent of Americans have a “subthreshold” form of bipolar disorder — less severe but still impairing. The author of the study, Kathleen Merikangas, a senior investigator at the Intramural Research Program of the National Institute of Mental Health, says that she does not feel that the number of bipolar adults is rising but that greater public awareness and diagnostic inclusiveness account for the jump. Still, that comes to nearly 10 million American adults with some form of bipolar disorder, only a small percentage of whom, the study found, were receiving appropriate treatment.
It was Phia whom Axelson first identified with bipolar disorder, and he described her case as “pretty clear cut.” Like James, Phia was overstimulated almost from birth. Marie couldn’t take her for a walk without Phia becoming hysterical in response to the sights and sounds they encountered. Marie couldn’t wear colored shirts; Phia couldn’t attend a play group. At times Phia seemed bizarrely overconfident for a toddler, pursuing men and flirting with them, showing no sign of fear or remorse when her grandfather, an imposing man, yelled at her. Marie began taking her daughter to a psychologist when she was 4. “I felt like I was doing something wrong,” she told me. Despite troubles with reading and an anxious habit of rubbing the soles of her feet against the bottoms of her shoes until blisters formed, Phia was able to function in public school. But from the moment she stepped off the school bus at the end of the day, it was bedlam.
“Everything set her off,” Marie recalled. “That wasn’t the snack that she wanted. She doesn’t want a snack. She’d want to be pushed on the swing, and it would be too high, or not enough, so I would push her a little bit more. There would be this screaming fit, kicking her legs, flailing on the swing. ‘I hate this, that’s not what I wanted!’ I’d be like, That’s it. We’re done on the swings. Then that would precipitate a fit.” It was impossible to keep Phia in a timeout; she would burst from her room laughing. Marie attached a lock to the outside of her door and cleared the room of things that might hurt her daughter as she raged.
Phia also had “silly” moods that quickly spiraled out of control, resulting in injuries: she broke her collarbone while diving over her bed in a silly fit; flailing, she would smack her arms inadvertently against the wall; she fell down the stairs repeatedly; she cracked her teeth on the edge of a swimming pool. Play dates were impossible; once, upset that a friend was about to leave, Phia told the girl that her father was beating her. She tormented Lucas; screaming at him, pushing and kicking him, once whipping him with a wand so hard that she raised welts through his shirt. And Phia herself was in agony. “She was asking for medicine for at least a year or so,” Marie said. “ ‘Isn’t there anything they can give me to help me calm down?’ ”
Much of Phia’s extreme behavior has eased with medication. When I visited the family at their two-story suburban home on the last day of March, a couple of weeks after their appointment with Axelson, there was an atmosphere of renewal: Marie was painting the kitchen cupboards; her husband (an engineer who works long hours; we never met) had replastered some damaged walls. Nowadays Phia has a best friend and goes to birthday parties. With her mind calmer, she told me, she loves to read and is fond of the American Girl mystery series. She and Lucas are lucky in that they seem not to have any other disorders, or “comorbidities,” like A.D.H.D., on top of their bipolar disorder. Both are doing well in public school.
I sat with Marie and Phia at a round outdoor table facing the backyard. Lucas was using a remote control to send an electric car roaring over the grass. Marie, a calm, gentle woman who chooses her words with care, told me that Lucas had improved on his higher Abilify dose. But Phia — surprisingly — had struggled since the appointment I was present for. After a blood draw, Axelson increased her lithium dose.
“My feelings weren’t really going that well,” Phia told me when I asked her about the previous weekend. “It was like all of a sudden, horribleish. Unexplainable mad, sad horrible feelings inside.” She blamed the several days of standardized tests she recently took at school, saying they made her anxious.
When Phia went inside, Marie told me she offered, the previous week, to take her daughter to the hospital. “She becomes fitful,” she said. “You have to physically hold her down, and that’s getting harder and harder to do. She’ll bang her head against the wall, she’ll bite herself. I brought up the hospital because she said: ‘I can’t take it anymore. I don’t want to be me. I don’t want to feel anymore. Why aren’t you doing anything about this?’ ”
As he played with his car, Lucas kept looking up, waiting for a little boy who lives around the block to appear on the other side of the wire fence that separates his yard from Lucas’s. Marie had repeatedly invited this boy over to play, but his parents always declined — she wondered if the mayhem they’d heard coming from her house before her children were medicated might be the reason. Toy cars and trucks were positioned along the fence from the boys’ prior meetings there. Sure enough, the neighbor soon appeared, calling Lucas’s name, and Lucas greeted him joyfully. Lucas hauled a supply of pirate weapons over to the fence and the boys divvied them up and began to play through the wire. Phia joined them, but when Lucas came over to ask his mother for another sword, his sister chased him down, upset; apparently, the neighbor boy asked who I was, and Lucas made some mention of meeting me at his doctor’s office.
“Don’t!” Phia implored her brother. “That’s our privacy. We don’t want them to know that we’re bipolar, that’s not their beeswax. That’s our secret thing, O.K.? That’s our family secret.” Only her good friends know that Phia takes medicine. “They don’t know what it’s about,” she told me. “They have no clue I’m bipolar.” She worries that if they knew, they would feel differently about her.
Lucas was reluctant to leave his friend for dinner; he waved and bellowed to him through the open window as he wolfed down his ravioli and salad. For dessert, Marie had placed small portions of leftover Easter candy inside Ziploc snack bags: one for each child. She was concerned about their weight, which had increased since they began taking medications — Phia’s especially. She wasn’t overweight, but her body had changed from slender to average, and her clothing size had increased from a 6X to a 12/14. “With all the emphasis on childhood obesity, it’s a daily worry,” Marie said. She dreaded comments about her children’s sizes from family members at a coming reunion; Marie says her parents and siblings don’t believe that her children are bipolar and disapprove of the medication. The school also has doubts. All these things make Marie question the diagnosis and medication.
“Their diagnoses are largely based on the history as I see it,” she told me. “And that feels like an incredible responsibility — how accurate am I?”
Eventually the children prepared to go upstairs for baths and bed. On the kitchen counter were four sectional pill containers, one for each member of the family. Marie put each child’s pills into a spoon and squirted a dollop of whipped cream on top to help them go down. Like any kid, Phia grabbed the whipped-cream canister before Marie could catch her and sprayed some into her mouth.
The next time I visited James and his family, a rainy day in May, things had taken a turn for the worse. The stimulant, which James’s psychiatrist had been planning to add for months when his lithium level was high enough, had made James manic — sleepless, talking incessantly, banging on radiators — and the school had immediately called and asked Mary to take him off it. This was a huge blow; both school and parents were counting on the stimulant to help James concentrate. Each year he has trouble in May (“Manic May,” Mary had dubbed it), and his hostility had reached new extremes; he wouldn’t shower or brush his teeth or do his homework without a fight.
One morning, when Mary’s husband was out of town, James stood on his bed and threatened her with a huge stick. “He said, ‘You’d better back down or I’m going to smash your face in,’ ” she said. “He was really beside himself. I looked at the base of the stick, and I thought, These are things you read about: he’s going to break my nose. And I knew I couldn’t show how petrified I was. So I stared him down, and he put the stick down, eventually.”
Another morning, James told Mary, in front of Claire: “I’m going to kill you. I’m going to slice you open with a knife.” Later, he apologized, distraught. But, for his mother, something shifted when she heard those words. “I always wondered what my breaking point would be,” she told me. “I thought maybe it would be if he accidentally hurt Claire, but the look on his face when he told me he was going to kill me, that was it.”
James’s dose of Abilify had been increased, which was helping somewhat. But Mary had also put in applications to three therapeutic boarding schools, where James might start sixth grade in the fall. The classes would be even smaller, and she said she hoped living at the school would help James with his behavioral issues. All three schools were out of state, and the family would initially have to pay room, board and tuition out of pocket — the prices ranged from $93,000 to $125,000 a year — and sue for reimbursement from New York City. Such costs would of course be prohibitive for most families, creating a terrible bind for those who can’t receive approval for in-state residential schooling yet are unable to handle their children at home. In some cases, these children end up becoming wards of the state.
James hadn’t yet returned from school when I arrived, but Frank, his father, was at home; he is a courtly man with reddish curly hair whose posture sagged visibly as we discussed the possibility of his son going away. Two of the schools had already expressed interest, and the third called while I was there; it, too, had a possible spot for James. This last was Mary’s favorite, based on its Web site: rural, all-boy; James could ride horses. She made an appointment to visit the school with Frank the following Thursday.
“Next Thursday!” he said, taken aback. “Oh, it’s moving fast.”
His biggest fear was that James would perceive boarding school as a punishment for behavior he can’t control. “He’s 10 years old, almost 11, and he still holds my hand when we walk on the sidewalk together,” Frank said. “So when he comes out with guns blazing and eyes popping out of his head, I know that this poor kid has a demon that’s just blasting its way out of him. I think what it’s like when I wake up on the wrong side of the bed and I feel angry for no particular reason, and I realize that this is James’s life moment to moment, every day.”
Shortly after James arrived home, cheerful and wearing a silky black track suit, Frank lay down for a nap. Mary asked her son to take his 4 p.m. Abilify pill; he refused. He politely asked to borrow my microphone and used his iPod to record himself singing. Then the sound of Claire laughing in the next room set him off. “Be quiet,” he suddenly shouted.
“Don’t talk to your sister that way,” Mary said.
“Be quiet!” he yelled at her.
“Hey,” she said, “you need to walk away. Now, it’s after 4 o’clock — ”
“I’m not taking it now.”
“Then you can go into your room — ”
James covered his ears and began to chant: “Sorry, sorry, nope can’t hear you, can’t hear you, sorry, can’t hear you.”
“It’s time for you to take your pill.”
“I’ll smack your face,” he said, brandishing his iPod earphones.
“Don’t threaten me with that or you’ll never see it again. Take your pill.”
James took the pill. Then he closed the door to block out the sound of his sister. “You open this door, Claire, I’ll pull out something really sharp on you,” he said.
“Calm down,” his mother said. “And no more talk about sharp things.”
“Sharp things!” James retorted.
He tried to play his iPod recording for us, but the speakers wouldn’t work. He became enraged and crashed out of the room, emitting animal yells that Mary had to translate for me: “I hate it! Never again! Never again!” A moment later he was back, whimpering, “I want Daddy.”
“Sweetheart, Daddy’s sleeping. Do you want him to help you with the machinery?”
“No! I want him! How stupid are you?”
“James, you’re being so rude. Are you hungry?”
“No, I’m not!” he howled, apoplectic. “I just ate raspberries. Why am I [expletive] hungry — frigging hungry?”
He threw himself onto a chair and began to play his Nintendo DS. A few minutes later, he curled, all 105 pounds of him, in his mother’s lap, his arms around her neck, head on her shoulder.
Later, when James was out of the room, Frank, now awake, spoke wistfully of a sense that he was growing apart from his son. They used to go to a diner together on Sunday mornings, just the two of them, but James rarely wanted to anymore. “He’s restless, but he doesn’t know what to do,” Frank said. “And anything you suggest is of no real interest to him.”
James came into the room and draped himself across his mother’s knees. “Sweetie pie, are you hungry?” Mary asked James. “Would you like Daddy to take you out for something to eat?”
James raised his arm, his head still buried in his mother’s lap. “Is that the thumbs up?” Mary asked.
“Mm-hmm.”
Frank looked startled, pleased. “O.K., I’m going to strike while the iron’s hot,” he said, rising from his chair. “Come, my little man.”
I felt an agonizing quiver of dread as father and son gathered jackets and wallet and shoes. Would James become angry? Would he change his mind? Would they actually get out the door without an explosion? When they did, it seemed miraculous.
In the abruptly quiet apartment, Mary and I talked about her son’s future. “It’s not that we even dream that James goes to college,” she told me. “We just want him to graduate from high school and be a functioning, contributing-to-society individual. Maybe he’ll meet a nice girl from Cape Cod and become a carpenter there. My biggest fear is that he’s going to become a loose cannon when he’s 18.” James’s psychiatrist reassured Mary that he would settle down after adolescence. “But she’s also the person who told me these were early-childhood issues and he’d be off Risperdal by the time he was 7 or 8,” Mary said. There was a long pause.
“It just keeps opening up like an inverted triangle,” she said finally. “The scope of his difficulties just gets broader and broader the older he gets.”
The most basic question about bipolar kids remains a mystery: Will they grow up to be bipolar adults? Because diagnosing the condition in children is still relatively new, no studies have yet followed a large number of them fully into adulthood. One fact is suggestive: bipolar kids are predominantly male, while the adult bipolar population skews slightly toward the female. The likelihood is that many of these kids will grow up to have mental-health issues of some kind, but which issues, and how chronic or severe they will be, no one really knows. A long-term study in Pittsburgh overseen by Axelson and Birmaher suggests that as children grow, the severity of their disorders can change; bipolar II, the less severe form of the disease, can convert to bipolar I, the more severe form. Nearly a third of subthreshold bipolar cases (BP-N.O.S., or Not Otherwise Specified, in D.S.M.) convert to the more serious forms.
Intriguingly, though, some of the bipolar children in the study appear to have gotten well. Roy Boorady, the director of psychopharmacology services at the New York University Child Study Center, told me: “Now that I’ve worked with kids long enough, you see some that had this mood instability or irregularity and were diagnosed as bipolar. But then you see them as they’re older, and they’re off in college and not having these labile mood swings anymore. You really wonder, What was it?”
Most clinicians say they believe that there will eventually be clear “biological markers” of bipolar disorder: ways to see and measure the disease as we can seizures, cancer or hypertension. Scientists are working to identify the genes (there appear to be many) involved in creating a predisposition for bipolar disorder. Brain imaging, still in its infancy, can already detect broad differences of size, shape and function among different brains. The hope is to know early on who is at risk so their condition can be diagnosed and treated as early as possible. Mental illness wreaks brutal damage on a life, crippling decision-making, competence and self-esteem to the point where digging out from under years of it can be next to impossible. And there is also a biological theory for why going untreated might worsen a bipolar person’s long-term prognosis. Epilepsy researchers have found that by electrically triggering seizures in the brains of animals, they can prompt spontaneous seizures, a phenomenon known as “kindling.” Simply having seizures — even artificially generated ones — seems to alter the brain in such a way that it develops an organic seizure disorder. Some scientists say that a kindling process may happen with mania, too — that simply experiencing a manic episode could make it more likely that a particular brain will continue to do so. They say this explains why, once a person has had a manic episode, there is a 90 percent chance that he will have another.
Kiki Chang, director of the pediatric bipolar-disorders program at Stanford, has embraced the kindling theory. “We are interested in looking at medication not just to treat and prevent future episodes, but also to get in early and — this is the controversial part — to prevent the manic episode,” he told me. “Once you’ve had a manic episode, you’ve already crossed the threshold, you’ve jumped off the bridge: it’s done. The chances that you’re going to have another episode are extremely high.”
Along with medication, Chang is exploring family therapy and other forms of stress reduction that might help fortify a child against a genetic proclivity for bipolar disorder. “If we wait too long, they will probably need chronic medication treatment,” he told me. “But if we can get in early enough, they may not need to stay on medication. So we’re hoping to get in and get out, and not subject them to the long-term side effects.” (As for short-term side effects, Chang says medications like lithium may actually be “neuroprotective” — i.e., might actually help a developing brain.) And while it is wildly unclear whether this picture of prevention will ever become a reality, Chang says he is a believer, and his hope is infectious.
Whatever the case, a synthesis is likely to emerge in the coming years. “There’s contention about lots of major scientific issues,” Leibenluft of the National Institute of Mental Health said. “People do the research and gradually, the data speak.”
Shortly after my last visit with James (who has begun boarding school and is doing well), I went back to Pittsburgh to meet Phia and Lucas at an appointment with Axelson. It was a beautiful day at the end of May, and the children were noticeably calmer than during my last visit to their doctor; Lucas sat quietly, making sketches of scenes from “Speed Racer” and “Star Wars” with a marker. Phia also made a sketch: two wavy lines, a pink one labeled “Am Now” and a purple line entitled “Should Be.” It was a mood chart. The lines were nearly superimposed.
Lucas, Phia and Marie all agreed that the two children were doing wonderfully. Phia had kept her cool even when she forgot to bring the music for a violin concert she was performing in. Lucas described a school project involving spring trees and talked fondly about his friend across the fence. Marie looked different; in the two months since I’d seen her, she had braces put on her teeth, updated her eyeglass prescription and had her first haircut in three years.
“We haven’t been to this spot before,” Marie said. “I have a hopefulness that there will be more to come.”
She and her husband bought a small grill, she told me, something they had never been able to do because the kids were too impulsive. And they hired an evening baby-sitter — another first — to go out on their anniversary.
“This is the goal, where we’d like to be,” Axelson said, shaking everyone’s hands as they left the office. “Hopefully we’ll be able to stay with this.”
Three months later, in mid-August, I heard from Marie that after more symptoms of mania in Lucas (which included opening the car door while it was moving), and increases in his Abilify, Axelson had finally recommended a move to lithium. Lucas had begun with a small dose — less than half what Phia was taking — but Marie had a feeling it would be gradually raised, as Phia’s had been since that first appointment I was present for in March.
She wrote to me in an e-mail message: “I re-experience some mourning or grieving for the kids with each medicine change. The unknowns are so daunting and somehow I feel so guilty for taking such risks. Putting them to bed at night seems to be the worst time for these feelings. I suppose because at that time they seem to be their youngest and most trusting and vulnerable. I pray for them under my breath.”
Jennifer Egan is a frequent contributor and novelist. Her most recent book is “The Keep.”

Read the Presidential Candidates' Responses to A-CHAMP Questionnaire

During the Presidential primaries A-CHAMP submitted questionnaires to all the candidates. Both Barack Obama and Joseph Biden (while still running for President) responded to our questionnaire.

We thought you might like to read their responses again now that they are part of the Democratic ticket. You can read and download their responses at our new web site, autismactionnetwork.org

Other candidates, including Republican Presidential nominee John McCain, were very responsive to A-CHAMP's contacts, but have not yet responded to our questionnaire. When Senator McCain provides a response we will publish it on our web site. We will also be submitting our questionnaire to Sarah Palin, nominee for Vice-President on the Republican ticket.

Understanding Aspergers Syndrome

By Elana Horwitz

Shira, a caring aunt, is concerned about her niece Chavi.

Chavi is a pretty and intelligent young woman. However, she seems uncomfortable in social situations. She hesitates to join in conversations, and seems to feel awkward when communicating with people. She is known as a quiet girl. Some describe her as shy. Chavi also appears to be slightly uncoordinated. She does not dance easily at simchos. She is also unusual in the way that she doesn’t laugh at jokes that others find humorous. In general, Chavi is a little distant from people.

A coworker suggested to Aunt Shira that her niece might have a form of autism. That made Shira laugh. How could Chavi be autistic when she is such a bright and capable girl?

When we hear “autism” mentioned, a stereotypical image may come to mind: a child who is mentally retarded, unresponsive and “lives in a world of his own”.

It may surprise many people that the diagnosis of autism includes a wide range of people.

Some people with autism are, in fact, mentally retarded, but most are of average intelligence. Others, such as many with Asperger’s Syndrome, can be even more intelligent than the average person.

Some people with autism cannot speak or communicate, but most can to some degree. People with Asperger’s can speak with extended vocabularies- but their speech may be very unusual. Or it may be only slightly unusual.

Some autistic people cannot communicate with others. Others can communicate in a limited way. Yet others, such as people with Asperger’s Syndrome, may seem to communicate in a typical way, but actually have difficulty forming and maintaining meaningful relationships, due to special challenges in the area of communication.

Asperger’s Syndrome can be overlooked by those who are not especially close with the affected person. Even someone close, like a parent, sibling, spouse, good friend, or doctor can have a vague sense of something being wrong, different, or unusual, without realizing exactly what the problem is.

My daughter Miriam is a shy girl. She’s introverted and doesn’t join in conversations or games much. Miriam seems uncomfortable sharing details about her daily experiences. She’s just different. I can’t pinpoint why her behavior seems strange.

Mordechai is chutzpadig to his parents, his peers and even his rebbe. He argues with everyone irrationally, seeming not to realize his place in relation to authority figures.

Some days, Bracha confides in me as a close friend would. On other days she acts distant, almost as if she considers me a stranger.

Asperger’s Syndrome was not widely recognized in the medical community until recent years. Therefore, while a school-age child may be correctly diagnosed these days, there are many adults with this condition who have never understood why they seem to experience so many unusual challenges.

Boys are more commonly diagnosed than girls. This may be because a boy with Asperger’s will tend to act out in disruptive ways, drawing attention to his need for professional evaluation. A girl may retreat into silence, not bothering anyone who does not attempt to draw her out. It’s easier for a girl to hide her differences and challenges. Many people wouldn’t detect the need for evaluating a sweet, quiet girl. Girls are also generally better at blending in with societal expectations, thereby masking their challenges.

What is Asperger’s Syndrome?

The Asperger’s Syndrome Support Network of Queensland, Australia explains that “if we are to examine the community in which we live, we often find people who are ‘odd’ in their thinking and ‘different’ in their behavior.” Some people appear to have many of the following key characteristics of people with Asperger’s, and some may appear to have just a few:

Difficulty with Social Relationships

People with Asperger’s Syndrome may try hard to fit in socially. They can appear to dislike human contact, but in actuality they are usually interested in relating with other people. However, they have trouble forming and maintaining meaningful relationships.

They can say things that seem insensitive or rude, without intending to offend. Even if they care about someone, they can fail to acknowledge the other person’s emotional state with a warm and empathetic response. Although it can seem as if the person with Asperger’s does not care, this is actually due to a difficulty in being naturally aware of other people’s needs. Once people with Asperger’s Syndrome are made aware of the needs of others, they are able to feel empathy to an appropriate degree. But due to self consciousness about being perceived as “different”, people with Asperger’s are sensitive about being told what to do. They may not openly express affection in ways that we typically expect of people who are close to us. They find it difficult to understand social etiquette, non-verbal signals and unclear verbal insinuations, including facial expressions, hints, sarcastic remarks, rhetorical questions and sophisticated jokes. They might express annoyance with the use of these modes of communication, stating that they simply dislike them. They have a low interest in grooming and fashion. Adults with Asperger’s often have worked hard to try to teach themselves these skills that are instinctive to most people. Children who are diagnosed with Asperger’s can be enrolled in programs that teach social skills.

Difficulty with Communication

Language development in a child may be delayed. Older people may speak fluently but may not notice the reaction of people listening to them. Thus they may appear insensitive to the listener’s feelings. They have trouble “reading” other people. Misunderstanding of the speaker’s intention can occur. The speaker’s words may be considered with suspicion and confusion. The speaker may be accused of harboring a bad motive with his words, even if his intention was not at all to hurt the feelings of the person with Asperger’s Syndrome.

If the person with Asperger’s is asked several questions, he may focus on one topic but ignore the rest. Overload of ideas can lead him to withdraw into silence, or to respond with terse answers of “yes”, “no”, or “I don’t know”. I was interested in how my neighbor Esti’s new computer job was going, so when we met at the supermarket I asked her, “How is your job? Is it interesting? Is it fulfilling?” She said “yes”.

Esti seemed to think that her brief, literal response constituted an appropriate contribution to our conversation. I might have received a fuller response had I asked her an open-ended question, such as, “What did you accomplish this week at work?”

But then again, had I phrased my question as, “Can you tell me what you accomplished this week at work?” Esti might have replied, literally, “yes”, and then retreated into silence, making our conversation very awkward.

Despite good verbal skills, people with Asperger’s may sound over-precise, often using more sophisticated vocabulary than that of most people. They may interpret words too literally. They may not appreciate jokes that make use of double meanings and therefore require a shift away from literal thinking. A person may say that he does not enjoy a certain joke. In actuality, he may find it challenging to interpret.

People with Asperger’s usually do not enjoy reading fiction because they find it difficult to relate to non-literal, abstract situations. My friends and I are raving about that new Jewish novel. We feel as if we know the characters personally, and we find ourselves caring about what will happen to them in the coming chapters, and considering what actions they might take. Shani, however, finds the book boring. She says the story is not reality, and feels no connection to what she considers to be meaningless fabrication. They find it challenging to know when or how to start or stop speaking in a conversation. They may engage in one-sided, long-winded conversations, without noticing if the listener is listening or trying to change the subject. Or they may contribute very little to a conversation, leaving the burden of speech with the other party, and thus creating an imbalance. They may speak in a voice that is monotonous, rigid or unusually fast.

Lack of Social Imaginative Play

Most children enjoy games where they pretend to be different characters such as Abba and Ima, or doctors and nurses. Asperger’s Syndrome children hardly ever play like this, preferring repetitive actions. For example they may enjoy arranging objects in lines or patterns.

Motor Awkwardness

They often appear clumsy and have poor coordination, for example, poor ball skills or handwriting that is difficult to decipher. They may have an odd posture or rigid gait. People with Asperger’s sometimes move very slowly and may require verbal or physical prompting to complete a task. They may have trouble crossing the threshold of a room. They may freeze in position or become temporarily mute in reaction to stress. Other repetitive actions can include rocking and hand-flapping. These actions can be soothing to the person with Asperger’s.

Sensory Sensitivity

Asperger’s Syndrome people often have an exaggerated response to sensory stimuli. Any of the five senses of sight, hearing, smell, taste and touch can be affected. Bright lighting or sudden loud, high pitched noises can cause them to react with screams of discomfort.

They may also be able to tolerate pain better than the average person. Lack of eye contact or discomfort with it may be apparent. This is because it feels overwhelming to focus on a person’s words and look at him or her at the same time. When I accidentally burned the potato kugel and the smoke alarm suddenly sounded, my nephew Chaim reacted by screaming. Even after the alarm was turned off, it took him a long time to calm down. He turned to us in anger, and implied that we had set off the alarm deliberately in order to upset him. He accused us of insensitivity in our being lax in preventing this painful experience from happening.

Special Interests and Routines

Many people with Asperger’s Syndrome may develop an obsessive interest in a hobby. They may memorize facts on a specific topic, for example, bus and train timetables. However, with encouragement and direction, interests can be developed to suit study subjects and employment. Asperger’s people require routine and structure in their lives. They can be very disturbed by changes in their daily routines, like a deviation from their regular schedules, or using a different travel route to school. They may find a day off from school or work to feel confusing unless a plan is established for the use of that time. Events and visits that differ from their routine can produce anxiety. A surprise birthday party would not work for my son. I made sure to discuss the party’s schedule in advance with him. I prepared him for all kinds of possibilities of scenarios that might happen when his classmates would visit our home.

Vulnerability

People with Asperger’s Syndrome seem somewhat naive and gullible, and therefore are more vulnerable to teasing and bullying. This can cause them to react in a socially inappropriate manner. As adults they are more prone to exploitation and are often considered eccentric or peculiar.

Difficulty Seeing the Consequences of their Actions

Individuals with Asperger’s Syndrome can be particularly good at focusing on detail. Seeing ‘the bigger picture’ requires flexible, hypothetical thinking, and often an understanding of how people affect and influence each other. People with Asperger’s Syndrome have great difficulty thinking in this manner. Shimon doesn’t intend to insult people by acting distant, speaking in a brusque manner, or saying precisely what is on his mind. He wonders why people get so angry with him. Human interaction bewilders him. It takes him so much effort to get along with people. It’s easier for Shimon not to become too close with others. It’s less painful to try not to care what others think of him.

Planning/Time Management

These skills require the ability to think hypothetically and predict consequences. Individuals with Asperger’s can find organization and multitasking challenging.

Normal or High IQ

Because people with Asperger’s are intelligent, they are able to articulate how their disability affects them. A comparison often used by them is that of feeling like they are from another planet - feeling alien to the culture of the society in which they live, because so many unofficial rules that are important to almost everyone else are meaningless to them. Social conventions seem silly and chit-chat holds little interest.

Many people with Asperger’s show a high aptitude in scientific, technical, computer or mathematical subjects, because of their logical and factual nature. The tendency for individuals with Asperger’s Syndrome to develop and nurture their “special interests” can result in great achievement. It is speculated that Albert Einstein may have had Asperger’s Syndrome. Born to a family of Jewish ancestry in Germany, he is considered one of the greatest physicists of all time. His name has become synonymous with great intelligence and genius. However, he was a loner as a child. He did not learn to speak until he was three and often repeated sentences obsessively until he was seven years old. Einstein had a lack of concern about his appearance. His uncut hair did not match the men’s hairstyles of his time. His career was centered on complex mathematical topics. The lectures he gave were said to be very confusing.

Bill Gates of Microsoft is said to show Asperger’s signs. He focuses on technical details, displays rocking motions, and speaks with a flat tone of voice. When Gates visited Israel in 2005, he was criticized in the media for spending much of his time in his hotel instead of mixing with Israelis. His understated comments about Israel having contributed to the computer industry, and his prediction that one day many Israelis will use computers in their offices and homes - a present reality - offended some businesspeople. If Asperger’s is indeed a factor in his personality, Gates’ behavior can be understood as a social impediment and communication misjudgment rather than intentionally insulting. An article called Kosher Slaughter (Mishpachah, 1998) focuses on Temple Grandin, who is a professor of Animal Science, and an engineer who designs highly complex cattle moving machinery which is used all over the world. Dr. Grandin has written two books and many research papers. Grandin has shown a way to restrain the animal while shechting that is easier, faster, causes less problems with blood flow and is a far more humane way to shecht. Temple Grandin has Asperger’s Syndrome and has made the major contribution of revolutionizing the way shechita is done around the world.

In “Our” World

Behaviors that can be interpreted as good middos may in fact hint at autism.

Nachman, a frequent Shabbos guest of ours, avoids eye contact, and hardly shares any information about himself, even when we try to draw him out. He sits quietly and observes. Is this young man extremely humble, or is there another explanation?

When invited into a neighbor’s home, Tova smiles, and stands silent and unmoving at the threshold of the doorway for several awkward moments. Is she modest and polite, or is she struggling with some sort of difficulty? It should be noted that so-called ‘Asperger’s traits’ are generalizations: people with the condition vary enormously, and because individuals become so adept at concealing or overcoming their problems, some traits will not be apparent, and others will be non-existent. The effects of Asperger’s Syndrome can be serious. Without the natural ability and tendency to conform and be accepted, individuals can find themselves unable to get employment or make friends. They can find themselves isolated and struggling to cope with the confusion and stress they experience with even seemingly simple day-to-day life.

How Does Asperger’s Feel?

The Asperger’s Syndrome Support Network of Queensland, Australia describes the way a person with Asperger’s might feel: You have just landed on another planet. You do not know the inhabitants, their language, their customs, how they interact or how you should behave in their presence. You are trying to find your way in a crowd, in a foreign country with only jumbled signposts to follow, and directions which you can only partially understand. You find it challenging to talk, use your hands, understand and use facial expressions or gestures, and you have not been taught sign language. You hear many different loud noises all at once and you are not unable to ‘tune in’ to any of them. For a person with Asperger’s Syndrome, ordinary situations can feel just like this. There are a significant number of individuals within the observant Jewish community with Asperger’s. Many families of affected individuals have kept this information private, worrying about negative consequences that might occur if they were to deal openly with this situation. It is a sensitive issue, and one that requires acceptance by, and support from, the community. With the right support and a tolerant environment, Asperger’s Syndrome need not be considered a tragedy and need not be a stigma. People with Asperger’s can be appreciated as having a different outlook on the world, as people who think in ways that are refreshing and valuable. Honesty, reliability, dedication, determination: all these are traits that are associated with the condition.

Kate Goldfield, a young adult with Asperger’s Syndrome writes:

I feel that it is only by learning about others’ struggles and truly trying to understand them that we can build a world that is safe for everyone – a world where we can grow and improve because we are taking advantage of everyone’s strengths, not just the strengths of a selective few. That’s the kind of world I want to live in. It’s the kind of world we all want to live in.

The information provided herein should not be used for the diagnosis or treatment of any medical condition. A licensed medical professional should be consulted for diagnosis and treatment of any and all medical conditions.



Marriage:

Is a specific person with Asperger’s or high functioning autism capable of a successful marriage?
Should a person with Asperger’s marry only another person with this condition, to ensure compatible ways of thinking?
Might couple’s counseling, or premarital counseling, benefit the relationship?
Should those involved in a shidduch be concerned about the genetic effect on the children that the couple might produce?

These questions require the perspective of da’as torah. Every situation is unique.

Rabbi J. David Bleich, Ph.D., in Medicine and Jewish Law, Volume 3, writes about genetics:

Every human being carries quite a number of “bad” genes. Every person has a genetic predisposition to one malady or another; indeed, we are probably all genetically predisposed to multiple diseases. Rejecting a prospective marriage partner because of the presence of a defective gene in no way assures that another prospective marriage partner is not endowed with an equally problematic genotype. Doubtless, by the time that all genetic implications are fully unraveled, no one will receive a clean bill of genetic health. If every prospective mate is rejected because of one genetic reason or another, marriage - and with it the human race - will become obsolete!

We have allowed myths to grow and stigmatization of carriers to permeate the community. As the science of genetics continues to develop, genetic links will be discovered for an ever-increasing panoply of diseases and more and more people will be identified as carriers of a rapidly expanding list of negative genetic traits. As a community, it is imperative that we embark upon a process of destigmatization.

There is a point at which we must recognize that we dare not be overly concerned and overly protective of ourselves and our progeny. “

Rabbi Bleich suggests acting prudently and rationally, while yet being “tamim im Hashem Elokecha”.


Signs of Autism
A child or adult with an autistic spectrum disorder might:
not play “pretend” games (such as “feeding” a doll)
not point at objects to show interest (point at an airplane flying over)
not look at objects when another person points at them
have trouble relating to others or not have an interest in other people at all
engage in inappropriate or minimal social interactions
avoid eye contact and want to be alone
have trouble understanding other people’s feelings or talking about their own feelings
prefer not to be held or cuddled or might cuddle only when they want to
appear to be unaware when other people talk to them but respond to other sounds
be very interested in people, but not know how to talk, play, or relate to them
repeat or echo words or phrases said to them, or repeat words or phrases in place of normal language (echolalia)
have trouble expressing their needs using typical words or motions
hold conversations almost always revolving around self rather than others
have “scripted,” “robotic,” or repetitive speech
repeat actions over and over again
have trouble adapting when a routine changes
have unusual reactions to the way things smell, taste, look, feel, or sound
lose skills they once had (for instance, stop saying words they were once using)
lack “common sense”
have problems with reading, math, or writing skills
be obsessed with complex topics such as patterns or music
portray awkward movements
portray odd behaviors or mannerisms

Causes:
An old theory about autism was that it results as a reaction to being raised by a “refrigerator mother”, who pays little attention to the child and is physically and emotionally unavailable. This idea has long been discreditedby science.

Controversial evidence suggests that thimerosal, (a preservative containing mercury that was used in the past in childhood vaccines) causes autism. This has not been proven by science. At any rate, in recent years, thimerosal levels have been reduced or eliminated in most vaccines routinely administered to babies and young children.

New studies connect autism and Asperger’s with genetic causes. Some of the traits found in people with these conditions appear to be hereditary.

Treatments:
There are no medications to treat Asperger’s Syndrome itself, but medications may be used to treat specific symptoms, such as anxiety, depression, hyperactivity and obsessive-compulsive behavior, in cases where these symptoms apply.

ABA (Applied Behavioral Analysis) uses open-ended questions rather than asking questions that can be answered with a “yes” or “no”, to help social speech by eliciting fuller responses.

TREATMENT AND EDUCATION of Autistic and Related Communication Handicapped Children aims to evaluate and address the underlying causes of autistic behaviors. TEACCH aims to provide the skills that will permit an easier understanding of the “world” and to make sense of other people’s behaviors.

PECS (Picture Exchange Communication System) can help individuals learn a quick way of communicating using pictures. Social Skills programs can help make those with Asperger’s aware of what behaviors are expected in society, and how to conform to these unofficial codes of conduct.

SENSORY INTEGRATION methods include brushing the skin, using weighted clothing and special shoes, various exercises intended to improve coordination, and other techniques claimed to desensitize or fine-tune the patient’s nervous system.

SUPPORT GROUPS for adults, or for parents of school age children, can serve to validate people’s experiences, as well as provide practical assistance in getting employment or attaining special services at school, or accommodations in the workplace.

In some locations these treatments may be available specifically to the frum community.

Organizations to contact include:

Shema Kolainu school and center
(718) 686-9600
info@skhov.org

KULANU inclusion, support and advocacy services
516-569-3083
info@kulanukids.org

HASC TAFKID - assistance in dealing with the Board of Education and children’s evaluations, support services, advocacy and referral services.

GRASP - in the past, provided a support group in Manhattan for Orthodox Jews with Asperger’s Syndrome
mjcarley@grasp.org.


Teaching our Children about Autism
In Kids Speak 5, Rabbi Chaim Walder introduces Baylie - a girl who doesn’t understand what is happening around her socially, but has an exceptional memory. Rabbi Walder deals with the question, “can autistics feel empathy?” And he concludes that they can - it just takes effort to learn how to communicate effectively with them. The story gives a positive impression of a child affected by autism.



Elana Horwitz is a teacher of Jewish Family and a freelance writer. Her essays, poems, letters and a story have appeared in Mishpacha, Hamodia, Yated Neeman, Down Syndrome Amongst Us, Partners in Kindness and The Jerusalem Post. She has also written web content for parenting sites. Her writing appears on her website. Mrs. Horwitz lives in Raanana with her family. Her husband, Rabbi Dovid Horwitz, directs the Raanana Community Kollel, whose web address is www.raananakollel.org.