December 7, 2008
By DACHER KELTNER
A FEW YEARS AGO my daughters and I were searching for sand crabs on a white-sand beach near Monterey. A group of sixth graders descended on us, clad in the blue trousers and pressed white shirts of their parochial school. Once lost in the sounds of the surf, away from their teacher’s gaze, they called one another by nicknames and mocked the way one laughed, another walked. Noogies and rib pokes, headlocks and bear hugs caught the unsuspecting off guard. Two boys dangled a girl over the waves. Three girls tugged a boy’s sagging pants down. Dog piles broke out. In a surprise attack, one girl nearly dropped a dead crab down a boy’s pants.
As they departed in sex-segregated lines, my daughters stood transfixed. Serafina asked me, “Why did that girl try to put the crab in the boy’s pants?” “Because she likes him,” I responded. This was an explanation Serafina and her older sister, Natalie, only partly understood. What I witnessed might be called “the teasing gap.”
Today teasing has been all but banished from the lives of many children. In recent years, high-profile school shootings and teenage suicides have inspired a wave of “zero tolerance” movements in our schools. Accused teasers are now made to utter their teases in front of the class, under the stern eye of teachers. Children are given detention for sarcastic comments on the playground. Schools are decreed “teasing free.”
And we are phasing out teasing in many other corners of social life as well. Sexual-harassment courses advise work colleagues not to tease or joke. Marriage counselors encourage direct criticism over playful provocation. No-taunting rules have even arisen in the N.B.A. and the N.F.L. to discourage “trash talking.”
The reason teasing is viewed as inherently damaging is that it is too often confused with bullying. But bullying is something different; it’s aggression, pure and simple. Bullies steal, punch, kick, harass and humiliate. Sexual harassers grope, leer and make crude, often threatening passes. They’re pretty ineffectual flirts. By contrast, teasing is a mode of play, no doubt with a sharp edge, in which we provoke to negotiate life’s ambiguities and conflicts. And it is essential to making us fully human.
The centrality of teasing in our social evolution is suggested by just how pervasive teasing is in the animal world. Younger monkeys pull the tails of older monkeys. African hunting dogs jump all over one another, much like pad-slapping, joking football players moments before kickoff. In every corner of the world, human adults play peekaboo games to stir a sulking child, children (as early as age 1) mimic nearby adults and teenagers prod one another to gauge romantic interest. In rejecting teasing, we may be losing something vital and necessary to our identity as the most playful of species.
THE LANGUAGE OF TEASING
A few hundred years ago, teasing was anything but taboo. Jesters and fools enjoyed high status. With their sharp-tongued mockery, outlandish garb and entertaining pranks, they highlighted the absurdities of all that was held sacred, from newborns and newlyweds to kings, queens and leaders of the church. In the tradition of the jester or the fool lies the essence of what a tease is — a playfully provocative mode of commentary.
But attempts to define the nature of that commentary can be difficult, not least because language itself gets in the way. We may use “teasing” to refer to the affectionate banter of middle-school friends, to the offensive passes of impulsive bosses and to the language of heart-palpitating flirtation, to humiliation that scars psyches (harsh teasing about obesity can damage a child’s sense of self for years) and to the repartee that creates a peaceful space between siblings. It is necessary to look at how we use language — especially at how we deliver our spoken words — to get at what teasing actually is.
The answer can be found, paradoxically, in a classic study of politeness by Penelope Brown, a linguistics anthropologist, and Stephen Levinson, a cognitive anthropologist, which differentiates between “on-record” communication” and “off-record” communication. On-record communication is to be taken literally and follows the rules of what the philosopher Paul Grice described as “cooperative, direct speech”: what is said should be truthful, appropriately informative, on topic and clear. When doctors deliver prognoses about terminal illnesses or financial advisers announce the loss of family fortunes, they adhere to these rules like priests following Scripture.
Very often, though, we do not want our words to be taken too literally. When we speak in ways that risk offense, for example when we criticize a friend, we may add intentional vagueness or unnecessary circumlocutions. Say a friend proves to be too confrontational at a dinner party. To encourage greater civility, we might resort to indirect hints (“Say, did you read the latest by the Dalai Lama?”) or metaphor (“I guess sometimes you just need to blow off some steam”). These linguistic acts establish a new channel of communication — off-record communication — signaling that what is being said has an alternate meaning.
Teasing is just such an act of off-record communication: provocative commentary is shrouded in linguistic acts called “off-record markers” that suggest the commentary should not be taken literally. At the same time, teasing isn’t just goofing around. We tease to test bonds, and also to create them. To make it clear when we’re teasing, we use fleeting linguistic acts like alliteration, repetition, rhyming and, above all, exaggeration to signal that we don’t mean precisely what we’re saying. (“Playing the dozens,” a kind of ritualized teasing common in the inner city that is considered a precursor to rap, involves just this sort of rhyming: “Don’t talk about my mother ’cause you’ll make me mad/Don’t forget how many your mother had.”) We also often indicate we are teasing by going off-record with nonverbal gestures: elongated vowels and exaggerated pitch, mock expressions and the iconic wink, well-timed laughs and expressive caricatures. A whiny friend might be teased with a high-pitched imitation or a daughter might mock her obtuse father by mimicking his low-pitched voice. Preteens, sharp-tongued jesters that they are, tease their parents with exaggerated facial expressions of anger, disgust or fear, to satirize their guardians’ outdated moral indignation. Similarly, deadpan deliveries and asymmetrically raised eyebrows (Stephen Colbert), satirical smiles and edgy laughs (Jon Stewart) all signal that we don’t entirely mean what we say.
THE BENEFITS OF TEASING
The language of teasing is intimately linked to the language of social behavior. Because teasing allows us to send messages in indirect, masked ways, it is an essential means of navigating our often-fraught social environments. In teasing, we become actors, taking on playful identities to manage the inevitable conflicts of living in social groups.
Placed into groups, children as young as 2 will soon form a hierarchy — it will be clear even among toddlers who is in charge and who is not. Hierarchies have many benefits — the smooth division of labor and resources, protecting weaker members of the group — but they can be deadly to negotiate. Male fig wasps chop their rivals in half with their large mandibles. Narwhal males loll about with tusk tips embedded in their jaws — vestiges of their status contests. Coyotes engage in heavily coded bouts of play; those who don’t live shorter, ostracized lives.
Given the perils of negotiating rank, many species have evolved dramatized status contests, relying on symbolic displays of physical size and force to peacefully sort out who’s on top. Stags roar. Frogs croak. Chimps throw branches around. Hippos open their jaws as wide as possible to impress competitors.
And humans tease. Teasing can be thought of as a status contest with a twist. As humans evolved the ability to form complex alliances, the power of a single individual came increasingly to depend on the ability to build strong bonds. Power became a matter of social intelligence (the good of the group) rather than of survival of the fittest (raw strength). As a status contest, teasing must walk a fine line, designating status while enhancing social connection.
Take nicknames. One of the most common forms of teasing, they also serve to assign status and enhance or create social bonds. They commonly emerge in marriages, between friends, among co-workers and between the public and its leaders. Artful nicknames involve such off-record markers as exaggeration, alliteration and metaphor, which comment upon the individual’s excesses. Muhammad Ali was the Louisville Lip; Richard Nixon, Tricky Dick; and George W. Bush, Uncurious George. During my fifth-grade trip to the Mendocino tide pools, I became Dacher Kelp Crab to all, a fitting riff on my name, our coastal locale and my sullen temperament. Nicknames are relationship-specific placeholders. They allow us to escape to the world of play, where we mock in affectionate fashion and critique the powerful in safety.
To examine the role nicknames play in helping a community to function, Erin Heerey, now a professor at Bangor University in Wales, and I invited members of a University of Wisconsin fraternityto the laboratory one October, just after what is known as rush week, when pledges angle to gain acceptance at the frat of their choice. We divided the fraternity brothers into groups of four — two high-status “actives,” or established members of the group, and two new low-status “pledges.” We gave each participant two randomly generated initials — “A. D.” or “T. J.” or “H. F.” or “L. I.” — and asked them to generate a nickname and story for each of the other three.
Our participants came up with nicknames like “human fly,” “another drunk,” “turkey jerk,” “little impotent,” “anal duck” and “heffer fetcher.” Each tease turned out to be a 30-second morality play. One low-status pledge was known as Taco John. The story behind the nickname was this: The pledge had gotten drunk on 18 shots of Bacardi during a late-night feast at Taco John’s; he then disappeared and was found passed out on the toilet, with his pants around his ankles, holding his genitals. Among other things, the fraternity members were notifying one another about moral boundaries: don’t get too drunk, and keep your private parts to yourself.
In the content and tones of the teases, we uncovered a familiar status dynamic. High-status “actives” teased the “pledges” in sharper, more provocative fashion, putting them in their place. Each “pledge” went after the other low-status pledges with edgy provocations, no doubt jousting for an edge. But when it came to their new high-status brothers, the pledges used teasing to praise. The most popular “pledges” proved to be the more playful teasers and were themselves teased in more flattering fashion: within a couple of weeks of the group’s formation, 30-second teases were demarcating rank.
For all the put-downs, the teasing among frat brothers and pledges did not appear to do any lasting damage. In studying transcripts of these teasing contests, you might expect to find a thrown punch or two. Instead, the fraternity members became better friends after their playful humiliations. Frame-by-frame analyses of the videos of these status contests revealed how this happened. At the punch line of a particular tease, the four brothers would actually burst into laughter (the target, not surprisingly, more quietly). Thanks to the scientific study of laughter, we know that when friends laugh, they laugh in unison, their fight-flight response (e.g., increased blood pressure) is calmed and mirror neurons fire; shared laughter becomes a collective experience, one of coordinated action, cooperative physiology and the establishing of common ground.
Perhaps surprisingly, the momentary pain of being teased can lead to pleasure. During their 15 seconds of humiliation, the targets of teasing displayed common signs of embarrassment — gaze aversion; a coy, nervous smile; a hand touching the face; a head bowed submissively so as to expose the neck; and blushing. These gestures are ancient signs of appeasement that trigger a reconciliation response in most mammals, as they did in our study. The more targets showed these evanescent signs of embarrassment, the more the teasers liked them.
Still, it’s hard not to remember why teasing has a bad name when it results in what sounds an awful lot like humiliation. In situations where power asymmetries exist, as they do in a frat house, how do we separate a productive tease from a damaging one? In part it’s the nature of the provocation. Productive teasing is rarely physically hurtful and doesn’t expose deep vulnerabilities — like a romantic failure or a physical handicap. Off-record markers — funny facial expressions, exaggeration and repetition — also help mark the tease as playful rather than hostile. And social context means a lot. Where teasing provides an arena to safely explore conflict, it can join people in a common cause. Especially when they’re allowed to tease back.
THE ROMANCE OF TEASING
I still remember that day, as clear as a bell. Off to the side of the seventh-grade four-square game, Lynn, future high-school mascot, valedictorian, and my first love, approached me with hands coyly behind her back. She stopped unusually close, and with a mischievous smile framed by her cascading hair, asked, “Hey Dacher, wanna screw?” As I was in the midst of mumbling an earnest and affirmative reply, she held her hand open in front of me, a screw lying flat on her palm. “Just teasing” I heard amid the screeching laughter of the cabal of finger-pointing girls.
Had I trained my ear to discern the off-record markers of teasing, I would have detected subtle deviations from sincere speech in the artfully elongated vowels of Lynn’s enunciation (“Hey Daaaacher, wanna screeeuuw?”). Had I read my Shakespeare I would have known to counter with my own provocation, and my chances for requited love would have risen. Here is a first expression of love between two of literature’s great lovers, Beatrice and Benedick, from Shakespeare’s “Much Ado About Nothing”:
BEATRICE: For which of my good parts did you first suffer love for me?
BENEDICK: Suffer love! A good epithet! I do suffer love indeed, for I love thee against my will.
BEATRICE: In spite of your heart, I think. Alas, poor heart, if you spite it for my sake, I will spite it for yours, for I will never love that which my friend hates.
BENEDICK: Thou and I are too wise to woo peaceably.
To tease is to woo wisely.
Monica Moore, a psychologist at Webster University, surreptitiously observed teenage girls at a mall and found their packlike meanderings to be punctuated by bursts of teasing. These young Beatrices would veer into the orbits of young Benedicks (and vice versa) to tickle, poke, nudge and squeeze, creating opportunities for physical contact. Touch is registered in specialized receptors under the surface of the skin, our largest sensory organ. Touch calms stress-related physiology; it helps to activate reward regions of the brain and the release of oxytocin, a chemical that promotes feelings of devotion. Snails shoot dartlike appendages into potential sexual partners, to stimulate their paramour’s sexual organs. We tease. And when we do, we look for traces of the telltale signs of desire — the lip pucker, the lip lick, the mutual gaze that lasts beyond the 0.20-second eye contact that defines more formal exchange. Teasing is the stage for the drama of flirtation, where suitors provoke in order to look for the sure signs of enduring commitment.
Long-term partners develop their own teasing idiom that weaves its way into their quotidian rhythms. This teasing typically focuses on sexual proclivities, bodily functions, sleep habits, eating habits and anachronistic fashion choices (my wife, Mollie, calls me “bison” when my hair begins to flip upward in nostalgic 1970s style). Such teasing marks partners’ quirks as deviant but endearing foibles, uniquely appreciated by the partner. Studies find that married couples with a rich vocabulary of teasing nicknames and formulaic insults are happier and more satisfied.
Romantic teasing provides a way of negotiating the conflicts that send many couples to the therapist’s couch. To explore how playful teasing shores up marital bonds, I asked couples to tease each other using the same nickname paradigm used in the fraternity study. The nicknames they invented drew on the metaphors of love documented by the Berkeley linguistics professor George Lakoff: they made references to each other as food objects (“apple dumpling”) or small animals (“adorable duckling”). The more satisfied the couple, the more the teasing was filled with off-record markers. And in a separate study, partners who managed to tease each other during a conflict — for example, over money or an infidelity — felt more connected after the conflict than those couples who resorted to the earnest criticism many therapists recommend. Teasing actually serves as an antidote to toxic criticism that might otherwise dissolve an intimate bond. Teasing is a battle plan for what Shakespeare called “the merry war.”
THE GOOD TEASE
Our rush to banish teasing from social life has its origins in legitimate concerns about bullies on the playground and at work. We must remember, though, that teasing, like so many things, gets better with age. Starting at around 11 or 12, children become much more sophisticated in their ability to hold contradictory propositions about the world — they move from Manichaean either-or, black-or-white reasoning to a more ironic, complex understanding. As a result, as any chagrined parent will tell you, they add irony and sarcasm to their social repertory. And it is at this age that you begin to see a precipitous drop in the reported incidences of bullying. As children learn the subtleties of teasing, their teasing is less often experienced as damaging.
In seeking to protect our children from bullying and aggression, we risk depriving them of a most remarkable form of social exchange. In teasing, we learn to use our voices, bodies and faces, and to read those of others — the raw materials of emotional intelligence and the moral imagination. We learn the wisdom of laughing at ourselves, and not taking the self too seriously. We learn boundaries between danger and safety, right and wrong, friend and foe, male and female, what is serious and what is not. We transform the many conflicts of social living into entertaining dramas. No kidding.
Dacher Keltner is a professor of psychology at the University of California, Berkeley, and an editor of the magazine Greater Good. His latest book, “Born to Be Good: The Science of a Meaningful Life,” from which this essay is adapted, will be published next month by Norton.
Tuesday, December 9, 2008
Wednesday, December 3, 2008
Brain waves show sound processing abnormalities in autistic children
CHICAGO – Abnormalities in auditory and language processing may be evaluated in children with autism spectrum disorder by using magnetoencephalography (MEG), according to a study presented today at the annual meeting of the Radiological Society of North America (RSNA).
"Using MEG, we can record the tiny magnetic fields associated with electrical brain activity," said Timothy Roberts, Ph.D., vice chair of research in the Department of Radiology at Children's Hospital of Philadelphia. "Recorded brain waves change with every sensation, thought and activity. It's like watching a movie of the brain in real time."
Typically used for epilepsy evaluation, MEG can also be used to identify timing abnormalities in the brains of patients with autism.
"We found that signatures of autism are revealed in the timing of brain activity," Dr. Roberts said. "We see a fraction of a second delay in autistic patients."
Autism is a complex developmental disability that affects approximately one in every 150 American children, mostly boys, according to the Autism Society of America. Autism inhibits the brain functions that govern the development of social and communication skills.
For a MEG exam, a helmet that houses magnetic detectors and looks similar to an old-fashioned hair dryer is lowered over the patient's head while the patient remains in a seated position. The helmet analyzes electrical currents from the brain.
For the study, 64 patients, age six to 15, with a diagnosis of autism spectrum disorder were evaluated with MEG. Audio stimulation was introduced to the children in the form of beeps, tones in pairs, vowels or sentences. Sounds were presented at different frequencies and tone pairs in rapid succession, including unusual streams of incongruous tones and vowels. The results were analyzed and compared with the results from a control group of age-matched non-autistic children.
The findings showed that in the children with autism there was a fraction of a second delay in the brain's response while processing the rapid succession sounds and the unusual streams, giving researchers an insight into the dysfunction of the auditory processing system in autistic children.
"This delay in processing certain types and streams of sound may underpin the subsequent language processing and communication impairment seen in autistic children," Dr. Roberts said.
Dr. Roberts predicts that the signatures of autism found in brain activity will become biomarkers to improve classification of the disorder and aid in treatment and therapy planning.
"We hope that in the future these signatures will also be revealed in the infant brain to help diagnose autism and allow earlier intervention," he said.
###
Co-authors are J. Christopher Edgar, Ph.D., Deborah M. Zarnow, M.D., and Susan E. Levy, M.D.
Disclosure: This study was funded by the National Institutes of Health and by the Nancy Lurie Marks Family Foundation.
Note: Copies of RSNA 2008 news releases and electronic images will be available online at RSNA.org/press08 beginning Monday, Dec. 1.
RSNA is an association of more than 42,000 radiologists, radiation oncologists, medical physicists and related scientists committed to excellence in patient care through education and research. The Society is based in Oak Brook, Ill. (RSNA.org)
Editor's note: The data in these releases may differ from those in the printed abstract and those actually presented at the meeting, as researchers continue to update their data right up until the meeting. To ensure you are using the most up-to-date information, please call the RSNA Newsroom at 1-312-949-3233.
For patient-friendly information on imaging technologies and procedures, visit RadiologyInfo.org.
"Using MEG, we can record the tiny magnetic fields associated with electrical brain activity," said Timothy Roberts, Ph.D., vice chair of research in the Department of Radiology at Children's Hospital of Philadelphia. "Recorded brain waves change with every sensation, thought and activity. It's like watching a movie of the brain in real time."
Typically used for epilepsy evaluation, MEG can also be used to identify timing abnormalities in the brains of patients with autism.
"We found that signatures of autism are revealed in the timing of brain activity," Dr. Roberts said. "We see a fraction of a second delay in autistic patients."
Autism is a complex developmental disability that affects approximately one in every 150 American children, mostly boys, according to the Autism Society of America. Autism inhibits the brain functions that govern the development of social and communication skills.
For a MEG exam, a helmet that houses magnetic detectors and looks similar to an old-fashioned hair dryer is lowered over the patient's head while the patient remains in a seated position. The helmet analyzes electrical currents from the brain.
For the study, 64 patients, age six to 15, with a diagnosis of autism spectrum disorder were evaluated with MEG. Audio stimulation was introduced to the children in the form of beeps, tones in pairs, vowels or sentences. Sounds were presented at different frequencies and tone pairs in rapid succession, including unusual streams of incongruous tones and vowels. The results were analyzed and compared with the results from a control group of age-matched non-autistic children.
The findings showed that in the children with autism there was a fraction of a second delay in the brain's response while processing the rapid succession sounds and the unusual streams, giving researchers an insight into the dysfunction of the auditory processing system in autistic children.
"This delay in processing certain types and streams of sound may underpin the subsequent language processing and communication impairment seen in autistic children," Dr. Roberts said.
Dr. Roberts predicts that the signatures of autism found in brain activity will become biomarkers to improve classification of the disorder and aid in treatment and therapy planning.
"We hope that in the future these signatures will also be revealed in the infant brain to help diagnose autism and allow earlier intervention," he said.
###
Co-authors are J. Christopher Edgar, Ph.D., Deborah M. Zarnow, M.D., and Susan E. Levy, M.D.
Disclosure: This study was funded by the National Institutes of Health and by the Nancy Lurie Marks Family Foundation.
Note: Copies of RSNA 2008 news releases and electronic images will be available online at RSNA.org/press08 beginning Monday, Dec. 1.
RSNA is an association of more than 42,000 radiologists, radiation oncologists, medical physicists and related scientists committed to excellence in patient care through education and research. The Society is based in Oak Brook, Ill. (RSNA.org)
Editor's note: The data in these releases may differ from those in the printed abstract and those actually presented at the meeting, as researchers continue to update their data right up until the meeting. To ensure you are using the most up-to-date information, please call the RSNA Newsroom at 1-312-949-3233.
For patient-friendly information on imaging technologies and procedures, visit RadiologyInfo.org.
Demonstration lets you get 'inside' autism
Dan Berrett
By Dan Berrett
Pocono Record Writer
November 17, 2008
EAST STROUDSBURG — Imagine playing a game of Simon Says for an entire day while, all around you, lights flicker on and off and the drone of static blasts at odd times.
William Stillman asked about 50 parents, aide workers and teachers to attempt that exercise briefly during an all-day lecture, "Demystifying Autism," at First Baptist Church on Nov. 6.
Stillman, an author, speaker and person with autism, was invited to Monroe County by Youth Advocate Programs. It is a national organization, with an office in Kresgeville, that works with young people with different needs, from avoiding the criminal justice system to needing behavioral health services.
Stillman asked the audience members how they felt when the one-minute, Simon Says exercise was finished.
Confused, overstimulated and hopeless, they said.
"You know people who are experiencing and feeling that every day," he said. People with autism spectrum disorders tend to be more sensitive to sounds and sights than others. The hum of fluorescent bulbs, the squeak of high-pitched voices, or the clicking of high heels on a hard floor can overstimulate to the point of distraction.
Stillman said he has Asperger's Syndrome, which is a milder version of autism. As a child, he said his diagnosis was that he was "weird." He said he was seen as antisocial, arrogant, aloof and quirky. "Among my typical peers, I was harassed and abused," he said.
Throughout the day, he tried to show what it's like to see the world through autistic eyes. He also tried to reframe how people think about autism. For him, demystifying autism is less about altering how people on the spectrum behave, which is the focus of most therapies. Instead, Stillman wants to change the perceptions of those who live and work with people with autism.
While people with autism may be unable to speak or have very little affect, they can think, feel and understand far more than they let on, Stillman said.
Instead of behaving in ways that are conventionally familiar, an autistic person's responses may be caught in a web of neural blips and misfires. Stillman argues that it's similar to what happens w hen someone's hand goes dead when they fall asleep on it.
"What if your inability to use that limb defined you?" he asked.
The trouble communicating extends in both directions — from the autistic person to wider society, and vice versa.
The subtleties of human communication — figurative language, facial and body language, and eye-contact — can prove daunting to people with autism.
"Those of you who are neurotypical, or average, are privy to a code," Stillman said.
He related a story of a young boy with autism ordering a birthday cake. When the person working at the counter asked him what he wanted his cake to say, the boy laughed, explaining that cakes can't talk.
It can be equally puzzling for autistic people to express themselves to other people. Their thoughts and feelings may come out differently — in the form of rocking back and forth, hand-flapping and repeatedly opening and closing doors. Stillman calls these "autistic hieroglyphics" that must be decoded to be understood.
Many educators view these repetitive actions as habits to be avoided because they allow those on the spectrum to duck human contact.
Stillman views it differently.
"This is a strength because it has a purpose and allow s them to create control," he said. "You do it, too."
He described gum-popping, twirling a lock of hair or fidgeting with an earring as ways that neurotypicals achieve the same end. "We're all more alike than we20are different," he said.
And when people with autism bang their head, bite their hand or other people, run away or throw desks, it's a function of other issues, Stillman said. They should be seen less as problem behaviors, and more as efforts to communicate.
"It's important that we listen to what people with autism are telling us," he said.
Stillman also takes issue with the conventional vocabulary of autism. He balks at calling it a disorder and at describing "behaviors," such as hand-flapping, as things that must be corrected.
He also chafes at language suggesting people with autism are not mentally capable. Some organizations distribute cards with tips cautioning that those with autism may "not understand what you say" or "act upset for no apparent reason."
Stillman believes that people with autism understand far more than they let on. And he is adamant that they should be treated with the presumption that they have an intellect — even if its expression is subtle and easy to miss.
Stillman's message of empathy runs through many of his books, including "The Soul of Autism," "Autism and the God Connection" and "The Autism Answer Book."
He prodded his audience to spread his message. People increasingly will come into contact with those who are autistic.
Current estimates from the Centers for Disease Control and Prevention are that one in 150 8-year-old children are diagnosed with autism.
At that rate, about 300 children in Monroe Co unty would have received that diagnosis.
"Every year we'll have more and more little people coming into our schools," he said. "We have to gear up."
By Dan Berrett
Pocono Record Writer
November 17, 2008
EAST STROUDSBURG — Imagine playing a game of Simon Says for an entire day while, all around you, lights flicker on and off and the drone of static blasts at odd times.
William Stillman asked about 50 parents, aide workers and teachers to attempt that exercise briefly during an all-day lecture, "Demystifying Autism," at First Baptist Church on Nov. 6.
Stillman, an author, speaker and person with autism, was invited to Monroe County by Youth Advocate Programs. It is a national organization, with an office in Kresgeville, that works with young people with different needs, from avoiding the criminal justice system to needing behavioral health services.
Stillman asked the audience members how they felt when the one-minute, Simon Says exercise was finished.
Confused, overstimulated and hopeless, they said.
"You know people who are experiencing and feeling that every day," he said. People with autism spectrum disorders tend to be more sensitive to sounds and sights than others. The hum of fluorescent bulbs, the squeak of high-pitched voices, or the clicking of high heels on a hard floor can overstimulate to the point of distraction.
Stillman said he has Asperger's Syndrome, which is a milder version of autism. As a child, he said his diagnosis was that he was "weird." He said he was seen as antisocial, arrogant, aloof and quirky. "Among my typical peers, I was harassed and abused," he said.
Throughout the day, he tried to show what it's like to see the world through autistic eyes. He also tried to reframe how people think about autism. For him, demystifying autism is less about altering how people on the spectrum behave, which is the focus of most therapies. Instead, Stillman wants to change the perceptions of those who live and work with people with autism.
While people with autism may be unable to speak or have very little affect, they can think, feel and understand far more than they let on, Stillman said.
Instead of behaving in ways that are conventionally familiar, an autistic person's responses may be caught in a web of neural blips and misfires. Stillman argues that it's similar to what happens w hen someone's hand goes dead when they fall asleep on it.
"What if your inability to use that limb defined you?" he asked.
The trouble communicating extends in both directions — from the autistic person to wider society, and vice versa.
The subtleties of human communication — figurative language, facial and body language, and eye-contact — can prove daunting to people with autism.
"Those of you who are neurotypical, or average, are privy to a code," Stillman said.
He related a story of a young boy with autism ordering a birthday cake. When the person working at the counter asked him what he wanted his cake to say, the boy laughed, explaining that cakes can't talk.
It can be equally puzzling for autistic people to express themselves to other people. Their thoughts and feelings may come out differently — in the form of rocking back and forth, hand-flapping and repeatedly opening and closing doors. Stillman calls these "autistic hieroglyphics" that must be decoded to be understood.
Many educators view these repetitive actions as habits to be avoided because they allow those on the spectrum to duck human contact.
Stillman views it differently.
"This is a strength because it has a purpose and allow s them to create control," he said. "You do it, too."
He described gum-popping, twirling a lock of hair or fidgeting with an earring as ways that neurotypicals achieve the same end. "We're all more alike than we20are different," he said.
And when people with autism bang their head, bite their hand or other people, run away or throw desks, it's a function of other issues, Stillman said. They should be seen less as problem behaviors, and more as efforts to communicate.
"It's important that we listen to what people with autism are telling us," he said.
Stillman also takes issue with the conventional vocabulary of autism. He balks at calling it a disorder and at describing "behaviors," such as hand-flapping, as things that must be corrected.
He also chafes at language suggesting people with autism are not mentally capable. Some organizations distribute cards with tips cautioning that those with autism may "not understand what you say" or "act upset for no apparent reason."
Stillman believes that people with autism understand far more than they let on. And he is adamant that they should be treated with the presumption that they have an intellect — even if its expression is subtle and easy to miss.
Stillman's message of empathy runs through many of his books, including "The Soul of Autism," "Autism and the God Connection" and "The Autism Answer Book."
He prodded his audience to spread his message. People increasingly will come into contact with those who are autistic.
Current estimates from the Centers for Disease Control and Prevention are that one in 150 8-year-old children are diagnosed with autism.
At that rate, about 300 children in Monroe Co unty would have received that diagnosis.
"Every year we'll have more and more little people coming into our schools," he said. "We have to gear up."
Wednesday, November 26, 2008
Gifted and challenged: When enlightening has to strike twice
By SARAH LEMAGIE, Star Tribune
November 23, 2008
Tyler Lehmann could read "Harry Potter" books before he started first grade, yet an anxiety disorder left him unable to speak to his teacher and all but one of his classmates in Woodbury. Simon Fink attends a school for gifted students in St. Paul, but Asperger's syndrome can make it hard for him to interact with peers and focus on lessons.
School can be tough for kids with challenges ranging from emotional disorders to ADHD or dyslexia. For gifted students, too, it's not always a cakewalk, between boredom and the sense of isolation that can result from being a "brainiac."
Then there are students such as Tyler and Simon, who fall into both categories.
Raising children with learning barriers is a task in itself, "but when they're bright and gifted and have a high IQ, it's even more frustrating, because the teachers just don't understand how to work with these kids," said Bloomington parent Chelle Woolley, whose 17-year-old son, Matt, was in fifth grade when he tested out for both giftedness and attention deficit disorder.
A growing awareness of so-called "twice-exceptional" or "2X" students, many of whom qualify for both gifted and special education services, is prompting some researchers to take a closer look at their needs. This fall, educators at the University of St. Thomas and four metro-area school districts are using a $490,000 federal grant to launch a five-year project aimed at developing better ways to teach 2X children, helping schools identify them and training teachers to work with them.
The project came out of talk this spring between educators at several schools for gifted students, including Dimensions Academy in Bloomington, Capitol Hill Magnet School in St. Paul, the Atheneum program in Inver Grove Heights and the Gateway program in Woodbury.
Some of them said they'd been noticing more gifted students with disabilities.
"We were kind of bemoaning that we had all this great curriculum and these wonderful teachers and we had this headful of knowledge about education, but we weren't meeting the needs of these twice-exceptional kids," said Dimensions director Richard Cash.
Though they're often happier in gifted classes, 2X kids often struggle in school despite their intelligence. Processing lessons can be hard, or homework can disappear.
"We had documentation, data that proved that these kids are really bright, really smart, but then we had performance that was the exact opposite," Cash said.
For Simon, a seventh-grader at Capitol Hill, an organized teacher can make a big difference in his schoolwork and cut down on the frustrations that come with having Asperger's, a type of autism. "He needs a schedule," said his mother, Pemly Fink. "He needs to know what's expected of him."
Educators also worry because they don't know how many kids they're missing.
In 2004, about 7 percent of U.S. public school students were identified as gifted and talented, while about 14 percent received services under federal disability law, according to the U.S. Department of Education.
At Dimensions Academy, 6 percent of 130 gifted students have been identified as 2X, Cash said. But numbers vary by school, and pinning down how many gifted students have an impairment is tricky. Some gifted kids go unidentified for years because of a problem that keeps them from showing the full extent of their intelligence. In other cases, giftedness can mask a disorder.
That's not to say there are scads of apparently average kids who belong in gifted programs but are held back by a hidden condition. "If you look at the general curriculum you offer in schools, it really does satisfy the needs of the majority of our children," said project director Karen Rogers, a St. Thomas professor of gifted studies.
But experts say it's crucial to find the 2X students. Gifted students with a hidden disability can give the impression that they're merely slacking or muddle along until a crisis hits. And if teachers don't find and challenge gifted kids, they can check out mentally and become rebellious or depressed.
"It's really easy ... to think that gifted kids sort of have it made," said Erin Boltik, able learner coordinator for the Inver Grove Heights schools. But if they don't get the attention they need, she said, "They won't grow."
As for 2X kids, "When we've gotten them into our program, they've done a lot better, but it's still not a perfect fit."
The grant will allow the group to develop an identification method and adapted reading and math lessons for 2X children, as well as a certificate program at St. Thomas to train teachers.
'These kids feel so different'
Some 2X students do better in classes with other gifted kids not only because they're challenged more, but because they feel less isolated. Take Ben Starfeldt, a sixth-grader at Dimensions who has a disorder that makes it hard for him to keep his feelings in check. Ben's family knew early that he was gifted -- he scored 146 on an IQ test when he was 8 -- but his elementary years in mainstream classes were marked by blow-ups that could make his teachers hesitant even to let him go to the library alone.
"He was an easy kid to pick on: the smart kid," said his father, Ross. "That just made the emotional disorder worse."
"I think in a regular classroom, these kids feel so different," said Tyler's mom, Lisa Rau Lehmann. "He used to refer to himself in kindergarten as a freak, because he could read chapter books."
Tyler, now a sixth-grader in the South Washington County School District's Gateway program for gifted students, was a talkative, funny toddler who was good with his brothers at home. But in public, he fell silent and couldn't do group activities or tell people his name.
Tyler is selectively mute, a disorder that can render him unable to talk. He still has rough spots in school, like the time he froze up during a science lab last year and his teacher nearly gave him a failing grade. But years of work with experts have helped Tyler, who now speaks very well, his mother said.
Not all 2X students are doing as well. Cash said some have struggled so much academically that they've had to leave Dimensions, even though the school tried "thing after thing after thing" to help. Older students at the school must maintain a B- average. Not all the students who have fallen short are 2X, Cash said, but those "were the ones that were the most disheartening, because we ran out of strategies."
Sarah Lemagie • 952-882-9016
November 23, 2008
Tyler Lehmann could read "Harry Potter" books before he started first grade, yet an anxiety disorder left him unable to speak to his teacher and all but one of his classmates in Woodbury. Simon Fink attends a school for gifted students in St. Paul, but Asperger's syndrome can make it hard for him to interact with peers and focus on lessons.
School can be tough for kids with challenges ranging from emotional disorders to ADHD or dyslexia. For gifted students, too, it's not always a cakewalk, between boredom and the sense of isolation that can result from being a "brainiac."
Then there are students such as Tyler and Simon, who fall into both categories.
Raising children with learning barriers is a task in itself, "but when they're bright and gifted and have a high IQ, it's even more frustrating, because the teachers just don't understand how to work with these kids," said Bloomington parent Chelle Woolley, whose 17-year-old son, Matt, was in fifth grade when he tested out for both giftedness and attention deficit disorder.
A growing awareness of so-called "twice-exceptional" or "2X" students, many of whom qualify for both gifted and special education services, is prompting some researchers to take a closer look at their needs. This fall, educators at the University of St. Thomas and four metro-area school districts are using a $490,000 federal grant to launch a five-year project aimed at developing better ways to teach 2X children, helping schools identify them and training teachers to work with them.
The project came out of talk this spring between educators at several schools for gifted students, including Dimensions Academy in Bloomington, Capitol Hill Magnet School in St. Paul, the Atheneum program in Inver Grove Heights and the Gateway program in Woodbury.
Some of them said they'd been noticing more gifted students with disabilities.
"We were kind of bemoaning that we had all this great curriculum and these wonderful teachers and we had this headful of knowledge about education, but we weren't meeting the needs of these twice-exceptional kids," said Dimensions director Richard Cash.
Though they're often happier in gifted classes, 2X kids often struggle in school despite their intelligence. Processing lessons can be hard, or homework can disappear.
"We had documentation, data that proved that these kids are really bright, really smart, but then we had performance that was the exact opposite," Cash said.
For Simon, a seventh-grader at Capitol Hill, an organized teacher can make a big difference in his schoolwork and cut down on the frustrations that come with having Asperger's, a type of autism. "He needs a schedule," said his mother, Pemly Fink. "He needs to know what's expected of him."
Educators also worry because they don't know how many kids they're missing.
In 2004, about 7 percent of U.S. public school students were identified as gifted and talented, while about 14 percent received services under federal disability law, according to the U.S. Department of Education.
At Dimensions Academy, 6 percent of 130 gifted students have been identified as 2X, Cash said. But numbers vary by school, and pinning down how many gifted students have an impairment is tricky. Some gifted kids go unidentified for years because of a problem that keeps them from showing the full extent of their intelligence. In other cases, giftedness can mask a disorder.
That's not to say there are scads of apparently average kids who belong in gifted programs but are held back by a hidden condition. "If you look at the general curriculum you offer in schools, it really does satisfy the needs of the majority of our children," said project director Karen Rogers, a St. Thomas professor of gifted studies.
But experts say it's crucial to find the 2X students. Gifted students with a hidden disability can give the impression that they're merely slacking or muddle along until a crisis hits. And if teachers don't find and challenge gifted kids, they can check out mentally and become rebellious or depressed.
"It's really easy ... to think that gifted kids sort of have it made," said Erin Boltik, able learner coordinator for the Inver Grove Heights schools. But if they don't get the attention they need, she said, "They won't grow."
As for 2X kids, "When we've gotten them into our program, they've done a lot better, but it's still not a perfect fit."
The grant will allow the group to develop an identification method and adapted reading and math lessons for 2X children, as well as a certificate program at St. Thomas to train teachers.
'These kids feel so different'
Some 2X students do better in classes with other gifted kids not only because they're challenged more, but because they feel less isolated. Take Ben Starfeldt, a sixth-grader at Dimensions who has a disorder that makes it hard for him to keep his feelings in check. Ben's family knew early that he was gifted -- he scored 146 on an IQ test when he was 8 -- but his elementary years in mainstream classes were marked by blow-ups that could make his teachers hesitant even to let him go to the library alone.
"He was an easy kid to pick on: the smart kid," said his father, Ross. "That just made the emotional disorder worse."
"I think in a regular classroom, these kids feel so different," said Tyler's mom, Lisa Rau Lehmann. "He used to refer to himself in kindergarten as a freak, because he could read chapter books."
Tyler, now a sixth-grader in the South Washington County School District's Gateway program for gifted students, was a talkative, funny toddler who was good with his brothers at home. But in public, he fell silent and couldn't do group activities or tell people his name.
Tyler is selectively mute, a disorder that can render him unable to talk. He still has rough spots in school, like the time he froze up during a science lab last year and his teacher nearly gave him a failing grade. But years of work with experts have helped Tyler, who now speaks very well, his mother said.
Not all 2X students are doing as well. Cash said some have struggled so much academically that they've had to leave Dimensions, even though the school tried "thing after thing after thing" to help. Older students at the school must maintain a B- average. Not all the students who have fallen short are 2X, Cash said, but those "were the ones that were the most disheartening, because we ran out of strategies."
Sarah Lemagie • 952-882-9016
Thursday, November 20, 2008
NIH Report: ADHD Medications Do Not Cause Genetic Damage in Children
U.S. Department of Health and Human Services
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Environmental Health Sciences (NIEHS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
For Immediate Release: Wednesday, November 19, 2008
CONTACTS: Robin Mackar, 919-541-0073,
Robert Bock or Marianne Glass Miller, 301-496-5133,
ADHD MEDICATIONS DO NOT CAUSE GENETIC DAMAGE IN CHILDREN
In contrast to recent findings, two of the most common medications used to treat attention deficit hyperactivity disorder (ADHD) do not appear to cause genetic damage in children who take them as prescribed, according to a new study by researchers at the National Institutes of Health (NIH) and Duke University Medical Center.
The study published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP) provides new evidence that therapeutic doses of stimulant medications, such as methylphenidate and amphetamine, do not cause cytogenetic (chromosomal) damage in humans. The researchers looked at three measures of cytogenetic damage in white blood cells of each child participating in the study and found no evidence of any changes after three months of continuous treatment.
"This is good news for parents," said Kristine L. Witt, M.Sc., a genetic toxicologist at the National Institute of Environmental Health Sciences (NIEHS) and co-author on the study, which was funded through the Best Pharmaceuticals for Children Act by NIEHS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), both parts of NIH. "Our results indicate that methylphenidate- and amphetamine-based products do not induce cytogenetic damage in children."
The researchers involved emphasize that the findings should not be interpreted as final proof of the long-term safety of stimulant drugs for the treatment of ADHD. "More research and close monitoring of children taking these medications for extended periods of time is needed to fully evaluate the physical and behavioral effects of prolonged treatment with stimulants," noted Scott H. Kollins, Ph.D., director of the Duke ADHD Program, where the study was conducted and a co-author of the paper.
ADHD is a disorder characterized by attention problems, impulsivity, and hyperactivity. About 3 to 5 percent of children in the United States have been diagnosed with the disorder, although several studies suggest 7 to 12 percent of children may be affected.
The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.
The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.
The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes). "We did not see any significant treatment-related increases in any of these three endpoints," said Donald R. Mattison, M.D., senior advisor to the director at NICHD. "These results add to a growing body of evidence that therapeutic levels of these medications do not damage chromosomes," he said.
The study was designed to determine the reproducibility of findings from a previously published paper that reported methylphenidate-induced chromosomal changes in children with ADHD. That paper raised concern for the medical community and parents, given that some of the changes have been associated with an increased risk of cancer. The current study was not able to replicate the findings from the previous study. The new JAACAP paper extends the literature by using a larger sample size than previous studies, investigating more than one commonly prescribed medication, and providing well-characterized results that can be generalized to other ADHD populations.
"One way scientists evaluate each other's work is by attempting to reproduce the original experiment or study," said Witt. "We designed a study with specific modifications to address issues raised with the original study. Thus, our results are based on a significantly larger number of children who were carefully evaluated using rigorous, accepted standards, which allowed us to produce high-confidence data at the end of our study."
This study was supported by the NIH/NICHD Best Pharmaceuticals for Children Act pediatric drug development program and the Intramural Research Program of the National Toxicology Program at the National Institute of Environmental Health Sciences. NIH Clinical Trial NCT00341029:.
The National Toxicology Program (NTP) is an interagency program established in 1978. The program was created as a cooperative effort to coordinate toxicology testing programs within the federal government, strengthen the science base in toxicology, develop and validate improved testing methods, and provide information about potentially toxic chemicals to health, regulatory, and research agencies, scientific and medical communities, and the public. The NTP is headquartered at the NIEHS. For more information about the NTP, visit.
The NIEHS supports research to understand the effects of the environment on human health and is part of NIH. For more information on environmental health topics, please visit our website at.
The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at
The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit.
##
This NIH News Release is available online at:
.
To subscribe (or unsubscribe) from this list, go to
.
NATIONAL INSTITUTES OF HEALTH NIH News
National Institute of Environmental Health Sciences (NIEHS)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
For Immediate Release: Wednesday, November 19, 2008
CONTACTS: Robin Mackar, 919-541-0073,
Robert Bock or Marianne Glass Miller, 301-496-5133,
ADHD MEDICATIONS DO NOT CAUSE GENETIC DAMAGE IN CHILDREN
In contrast to recent findings, two of the most common medications used to treat attention deficit hyperactivity disorder (ADHD) do not appear to cause genetic damage in children who take them as prescribed, according to a new study by researchers at the National Institutes of Health (NIH) and Duke University Medical Center.
The study published online this month in the Journal of the American Academy of Child and Adolescent Psychiatry (JAACAP) provides new evidence that therapeutic doses of stimulant medications, such as methylphenidate and amphetamine, do not cause cytogenetic (chromosomal) damage in humans. The researchers looked at three measures of cytogenetic damage in white blood cells of each child participating in the study and found no evidence of any changes after three months of continuous treatment.
"This is good news for parents," said Kristine L. Witt, M.Sc., a genetic toxicologist at the National Institute of Environmental Health Sciences (NIEHS) and co-author on the study, which was funded through the Best Pharmaceuticals for Children Act by NIEHS and the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), both parts of NIH. "Our results indicate that methylphenidate- and amphetamine-based products do not induce cytogenetic damage in children."
The researchers involved emphasize that the findings should not be interpreted as final proof of the long-term safety of stimulant drugs for the treatment of ADHD. "More research and close monitoring of children taking these medications for extended periods of time is needed to fully evaluate the physical and behavioral effects of prolonged treatment with stimulants," noted Scott H. Kollins, Ph.D., director of the Duke ADHD Program, where the study was conducted and a co-author of the paper.
ADHD is a disorder characterized by attention problems, impulsivity, and hyperactivity. About 3 to 5 percent of children in the United States have been diagnosed with the disorder, although several studies suggest 7 to 12 percent of children may be affected.
The current study included 63 children, ranging from 6-12 years of age, who met full criteria for ADHD but who had not previously been treated with stimulant medications. Children in the study were divided into two groups and treated by a board-certified child psychiatrist with either methylphenidate (commercially available as Ritalin LA and Concerta) or with mixed amphetamine salts (Adderall and Adderall XR). Blood samples were taken before the medication was started to establish baseline values for the cytogenetic measures that were analyzed in the study, and a second sample was collected after three months of continuous treatment. Forty-seven children completed the full three-month treatment schedule.
The researchers found no significant differences between the two groups of children with regard to age, gender, race, body weight, height, or ADHD subtype. The groups also showed very similar ADHD symptom levels at initial screening and children in both groups responded equally well to the medication.
The researchers looked at three standard indicators of chromosomal damage: structural chromosomal aberrations (breaks in chromosomes), micronuclei (small nuclei consisting of chromosome fragments produced by breakage or whole chromosomes lost from the main nucleus after the cell divides), and sister chromatid exchanges (exchanges of genetic material between a pair of identical chromosomes). "We did not see any significant treatment-related increases in any of these three endpoints," said Donald R. Mattison, M.D., senior advisor to the director at NICHD. "These results add to a growing body of evidence that therapeutic levels of these medications do not damage chromosomes," he said.
The study was designed to determine the reproducibility of findings from a previously published paper that reported methylphenidate-induced chromosomal changes in children with ADHD. That paper raised concern for the medical community and parents, given that some of the changes have been associated with an increased risk of cancer. The current study was not able to replicate the findings from the previous study. The new JAACAP paper extends the literature by using a larger sample size than previous studies, investigating more than one commonly prescribed medication, and providing well-characterized results that can be generalized to other ADHD populations.
"One way scientists evaluate each other's work is by attempting to reproduce the original experiment or study," said Witt. "We designed a study with specific modifications to address issues raised with the original study. Thus, our results are based on a significantly larger number of children who were carefully evaluated using rigorous, accepted standards, which allowed us to produce high-confidence data at the end of our study."
This study was supported by the NIH/NICHD Best Pharmaceuticals for Children Act pediatric drug development program and the Intramural Research Program of the National Toxicology Program at the National Institute of Environmental Health Sciences. NIH Clinical Trial NCT00341029:
The National Toxicology Program (NTP) is an interagency program established in 1978. The program was created as a cooperative effort to coordinate toxicology testing programs within the federal government, strengthen the science base in toxicology, develop and validate improved testing methods, and provide information about potentially toxic chemicals to health, regulatory, and research agencies, scientific and medical communities, and the public. The NTP is headquartered at the NIEHS. For more information about the NTP, visit
The NIEHS supports research to understand the effects of the environment on human health and is part of NIH. For more information on environmental health topics, please visit our website at
The NICHD sponsors research on development, before and after birth; maternal, child, and family health; reproductive biology and population issues; and medical rehabilitation. For more information, visit the Institute's Web site at
The National Institutes of Health (NIH) -- The Nation's Medical Research Agency -- includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. It is the primary federal agency for conducting and supporting basic, clinical and translational medical research, and it investigates the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit
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This NIH News Release is available online at:
To subscribe (or unsubscribe) from this list, go to
THE MIND More Than Just 'Quirky'
By Jeneen Interlandi | Newsweek Web Exclusive
Nov 13, 2008
Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child's behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, 'quirky' had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. "If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out," Liane says. "She would try to take it away from the other kid, because she didn't get that not everything 'monkey' was hers." Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. "Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it," she recalls. "For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all." Doctors were hoping the psychological tests would yield-up some clues.
The "Sally-Anne" test involved a simple skit: 'Sally' put a marble in the basket and then walked away. Once she was gone, 'Anne' took the marble out of the basket and put it in a box. When 'Sally' returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn't know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn't understand that other people don't know everything they know, and vice versa. Psychologists refer to this as a "theory of mind," and people who fail the Sally-Anne test are said to lack one, meaning they can't anticipate other people's thoughts and feelings. Liane's daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger's syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.
It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
But much more research is needed before those anecdotes can be marshaled into a coherent picture. "Ultimately, we might want to look for different symptoms in girls," says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. "But we have a lot more questions than answers at this point." Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.
Anyone who knows a boy with Asperger's syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.
Now, replace oscillating fans with something more conventional - say horses or books - and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. "Girls tend to get obsessed with things that are a little less strange," says Elizabeth Roberts, a psychologist at New York University's Asperger's Institute. "That makes it harder to distinguish normal from abnormal." That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls' obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble."
Of course, it's not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. "We tend to notice shyness in boys as 'off,'" says Loveland. "In girls, we can almost see it as a good trait." And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.
But even as they effectively mask Asperger's in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. "By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can't keep up with all the nuances," says Janet Lainhart, a doctor at the University of Utah's Brain Institute. "Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable."
Not everyone is persuaded that the symptoms of Asperger's differ between boys and girls. Ami Klin, director of Yale's autism research group cautions that no Asperger's trait can be defined as gender-specific quite yet. "It's a possibility," he says. "But I don't know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has."
What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger's. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger's easy prey for sexual predators. "That is a real distinction and my real concern for girls on the spectrum," says Klin. "That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren't getting the right guidance."
Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don't muddy up the data. As a result, only a very small body of work addresses the Asperger's gender gap, even though such studies could lead to better diagnosis of both autism and Asperger's.
Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. "A lot of people see Baron-Cohen's work as 'politically incorrect,'" says Loveland. "Any time you start talking about a biological basis of sex differences, you are looking at controversy."
Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger's. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. "They really want to understand how to do these very-female things, they just need the guidance to get there," she says.
Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane's daughter wasn't the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. "It was like a light bulb went off," she says. "I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity." And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. "Her experience has been totally different from mine," she says. "She's had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn't be able to tell which one has Asperger's."
Nov 13, 2008
Liane Willey watched from behind a two-way mirror as doctors at the University of Kansas performed a series of psychological tests on her 5-year-old daughter. From the day the girl was born, Liane had worried about the child's behavior: as an infant, she would not suckle. As a toddler, she bit other children and refused to let anyone hug her. Doctors had continually assured the young mother that her daughter was normal, if a bit quirky. But with each passing year, 'quirky' had become less apt a description. By the age of 5, she had no friends and a profound obsession with monkeys. "If another kid came to school with a toy monkey or something with a monkey picture on it, she would freak out," Liane says. "She would try to take it away from the other kid, because she didn't get that not everything 'monkey' was hers." Liane had been a quirky child herself, and knew the difficult path that lay ahead for her daughter. "Growing up, I tried everything—psychotherapy, group therapy, antidepressants—none of them gave me a better sense of the world or my place in it," she recalls. "For her, I wanted something that would actually work, and I wanted them to put a name to the angst once and for all." Doctors were hoping the psychological tests would yield-up some clues.
The "Sally-Anne" test involved a simple skit: 'Sally' put a marble in the basket and then walked away. Once she was gone, 'Anne' took the marble out of the basket and put it in a box. When 'Sally' returned, the doctors asked where she would look for her marble. Anyone over the age of 5 is expected to know that Sally would look in the basket first, because she doesn't know that her marble has been moved. Expecting Sally to look in the box first suggests that the test-taker doesn't understand that other people don't know everything they know, and vice versa. Psychologists refer to this as a "theory of mind," and people who fail the Sally-Anne test are said to lack one, meaning they can't anticipate other people's thoughts and feelings. Liane's daughter failed the Sally-Anne test, along with every other assessment meant to screen for Asperger's syndrome, a high-functioning autism spectrum disorder, which the doctors promptly diagnosed her with. The good news was that they had caught it early.
It's not uncommon for girls with Asperger's to go undiagnosed well into adulthood. Like heart disease, this high-functioning autism spectrum disorder is 10 times more prevalent in males, so doctors often don't think to look for it in females. But some experts have begun to suspect that unlike heart disease, Asperger's manifests differently, less obviously in girls, and that factor is also causing them to slip through the diagnostic cracks. This gender gap may have implications for the health and well-being of girls on the spectrum, and some specialists predict that as we diagnose more girls, our profile of the disorder as a whole will change. Anecdotally, they report that girls with Asperger's seem to have less motor impairment, a broader range of obsessive interests, and a stronger desire to connect with others, despite their social impairment.
But much more research is needed before those anecdotes can be marshaled into a coherent picture. "Ultimately, we might want to look for different symptoms in girls," says Katherine Loveland, a psychiatry professor and autism researcher at the University of Texas in Houston. "But we have a lot more questions than answers at this point." Answering those questions has proven a tricky proposition: to draw any real conclusions, many more girls will have to be studied. And that means more of them will have to be diagnosed in the first place.
Anyone who knows a boy with Asperger's syndrome might tell you that the disorder (characterized by obsessive interests and an inability to connect with others) is impossible to miss. For starters, the things most boys get obsessed with are difficult to shrug off as quirky. Imagine, for example, a 7-year-old boy with encyclopedic knowledge of vacuum cleaners or oscillating fans but almost no friends or playmates.
Now, replace oscillating fans with something more conventional - say horses or books - and imagine a girl instead of a boy. A horse obsession, even one of frightening intensity, might fly under the radar. "Girls tend to get obsessed with things that are a little less strange," says Elizabeth Roberts, a psychologist at New York University's Asperger's Institute. "That makes it harder to distinguish normal from abnormal." That observation is consistent with a 2007 study of 700 children on the spectrum, which found that girls' obsessive interests reflected the interests of girls in the general population; the same was not true for boys.
In addition to more socially acceptable obsessions, Roberts says, the Aspie girls she sees are more adept at copying the behaviors, mannerisms and dress codes of those around them, than Aspie boys tend to be. "From my personal experience, they seem to have a greater drive to fit in than boys with Asperger's do," she says. "So they spend a lot of time studying other girls and trying to copy them." When social settings change, this can spell disaster. "As you move from high school to college, or from one group of friends to another, you have a whole new set of rules to learn," said one Aspie woman who asked not to be named. "Not only do you lose your own identity, but if you end up surrounded by the wrong people—mimicking their behavior without understanding the motivations behind it can lead to big trouble."
Of course, it's not just different symptoms that stymie diagnosis—cultural conditioning may also play a role. What looks like pathological social awkwardness in a little boy can seem like mere bashfulness or just good old-fashioned manners in a little girl. "We tend to notice shyness in boys as 'off,'" says Loveland. "In girls, we can almost see it as a good trait." And while boys are often diagnosed when they begin expressing their frustration as aggression and find themselves in trouble at school, girls —even Aspie girls—learn to internalize their feelings, not to act out, which can make them more anxious and less noticeable at the same time.
But even as they effectively mask Asperger's in girls, social mores might also make the disorder more harrowing for them. As they approach adolescence, girls face greater pressure to be sympathetic and empathetic than boys do. "By the time girls reach junior high, their social networks have become extraordinarily complex, and Aspie girls can't keep up with all the nuances," says Janet Lainhart, a doctor at the University of Utah's Brain Institute. "Boys struggle socially as well, but their peers mature much slower so their inability to empathize is seen as more forgivable."
Not everyone is persuaded that the symptoms of Asperger's differ between boys and girls. Ami Klin, director of Yale's autism research group cautions that no Asperger's trait can be defined as gender-specific quite yet. "It's a possibility," he says. "But I don't know anyone who has tested it and I can think of many exceptions to any rule you come up with about what narrow interests or other traits each gender has."
What everyone does seem to agree on is that without diagnosis, girls are unlikely to get the support—including special education and behavioral therapy—that has proven so helpful to boys with Asperger's. Even worse, their desperation for human interaction—combined with their inability to gauge the intentions of those around them—can make girls with Asperger's easy prey for sexual predators. "That is a real distinction and my real concern for girls on the spectrum," says Klin. "That they will be more susceptible to rape, abuse and drug addiction because of their social deficiencies and because they aren't getting the right guidance."
Despite the urgent need for more research, Klin says that scientists who study ASDs have effectively orphaned this population. Because there are so few of them, girls are often yanked from studies altogether so that they don't muddy up the data. As a result, only a very small body of work addresses the Asperger's gender gap, even though such studies could lead to better diagnosis of both autism and Asperger's.
Preliminary genetic analyses suggest that autism may be caused by different genes in each gender; and at least one MRI study has found differences in the brain anatomy of boys and girls on the spectrum. Simon Baron-Cohen, a renowned autism researcher, has shown that high levels of fetal testosterone may also play a role. But that work has yet to be replicated, mainly, say Loveland and others, due to a lack of funding or interest. "A lot of people see Baron-Cohen's work as 'politically incorrect,'" says Loveland. "Any time you start talking about a biological basis of sex differences, you are looking at controversy."
Meanwhile, many schools and clinics that work with children on the spectrum have begun forming girls-only clubs in an effort to build better support systems for girls with Asperger's. Lainhart has created a group at her Utah practice. The first things her girls, who range in age from early teens to late 20s, wanted to know: how to plan a dinner party and how to hold a dance. "They really want to understand how to do these very-female things, they just need the guidance to get there," she says.
Of course, getting that guidance depends on getting the right diagnosis early on. And it turned out that Liane's daughter wasn't the only one to fail the Sally-Anne test that afternoon. Liane herself had not been able to distinguish between what she knew and what Sally knew. Doctors diagnosed her right alongside her daughter. Liane says that diagnosis changed everything for her. "It was like a light bulb went off," she says. "I was able to seek out the right kind of treatment, and after a lifetime of mimicking others, finally find my own identity." And early diagnosis has helped her daughter (now a healthy teenager) avoid many of the pitfalls that Liane herself fell prey to. "Her experience has been totally different from mine," she says. "She's had special education and behavioral therapy from the time she was a young girl, and if I introduced you to my three daughters today, you wouldn't be able to tell which one has Asperger's."
Wednesday, October 29, 2008
The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter
CALENDAR
Wed:11/12 @ 6 pm Garden City, NY Guardianship in NYS. An overview workshop for parents and caregivers. For location and detailed information RSVP to (516) 521 1099
Thursday 11/20 @ 12 pm Garden City, NY. Our core workshop: Addressing the long term legal, financial and quality of life issues families with special needs children and adults face. For location and detailed information RSVP to (516) 521 1100.
Thursday 11/27
HAPPY
THANKSGIVING
Tues 12/2 @ 5 PM Garden City, NY. Protecting benefit eligibility: A focus on special needs trusts, wills and legal family planning. For location and detailed information RSVP to (516) 521 1100.
PFSS Parent Training & Provider Training Courses
The Preventive Family Support Services is a 501c3, Not-for-profit division of the Special Needs Advisory Partners and is dedicated to bringing free, educational parent and provider trainings to schools, support groups, lectures,PTA's and our local community. If you would like to schedule a workshop, please call our main office to set up a meeting to discuss the group ypu'd like us to present to.
WORKSHOP SERIES
“Securing the long term quality of life for disabled individuals” Our core workshop and critical first step introduction to families addressing many areas of concern. Topics include information on understanding federal government benefits, navigating the SSI maze, addressing the legal and financial concerns of families with special needs children and adults, the importance of a properly drafted last will and testament, creating a letter of intent, aging out of the school system, finding support groups and lay advocates and the HIPA Act and it’s impact on the health care decisions of disabled individuals. Workshop runs approx 1:30 min
“Understanding benefit eligibility guidelines-Applying for OMRDD services in NY”
A workshop designed to introduce families to the benefits and entitlements that are offered to individuals with a formal diagnosis through OMRDD, The Office Of Mentally Retarded and Developmentally Delayed Persons in NYS. This workshop explains who and hat DDSO’s are and how they help, it defines the role of an MSC and advocates. It covers misconceptions of the “Medicaid” and “Medicaid Waiver” programs and helps families understand that benefit eligibility is NOT always based on income, but can be based on diagnosis. We address the importance of obtaining and securing eligibility, keeping eligibility and how even for families earning an above average income, there are services and programs that money can’t buy that loved ones must remain eligible for. Workshop runs approx 1 hr.
“An overview of Guardianship in NYS” this workshop explains the concept of becoming guardian of your own child with a disability at age of majority. We discuss the pro’s and con’s while we remain neutral and supportive of a families choice. We discuss how to choose a proper guardian, considerations when living as an elderly disabled individual, alternative housing opportunities, and the actual filing and surrogates court process entailed when acquiring guardianship. Workshop runs approx 1:30 min
"A Helping Hand For MSC's" Introducing Medicaid Service Coordinators and their agencies to PFSS and the resources we can provide to their consumers. This brief introduction helps MSC's identify specific needs of consumers that PFSS and SNAP can train and assist them with. MSC's who would like to participate in our helping hands program get weekly updates with articles, information, events, and training materials as another resource to provide their consumers. Workshop runs approx. 45 minutes
“Creating Your Letter of Intent" This workshop is by invitation only and is offered to families who have come through the process of securing their legal documents. Having the Letter of intent without securing legally the security of lived ones is offering false security. Our workshop is an interactive exercise where we help our families create their special needs loved ones' handbook. Topics include, transfer of critical and vital information, future planning for your loved ones' quality of life, on boarding a guardian to the real day to day care your loved one needs, documenting ideals for your loved ones' as they age, feelings on health, dating opportunities, religion, sex life, housing opportunities, finances and more. Workshop takes place over 2 days for 4 hours each session.
"Legacy Giving" Doing well by doing good. The basics behind tax favorable and philanthropic giving. Leveraging your assets and estate plan as a way to create a lifetime of care and consideration for a person, organization, or foundation. This workshop is done for individuals and families as part of their estate planning process. It has also been presented to philanthropic benefactors invited by non profit organizations as part of aligning their vision for continued support, and creative legacy gifting opportunities. Presentation time varies.
“The ABC’s of IEP’s”, The Americans With Disabilities Education Act Allows disabled individuals access to a free, fair public education. Our workshop addresses the importance and distinction between private vs in district evaluations, What to look for in an IEP (Individualized Education Plan), understanding the diagnosis and it’s prescribed care in a educational facility, what to do if your childs Individualized Education Plan is being “broken”, a parents rights to mediation and advocacy in the school districts, legal intervention methods, private placement schools and educational/living facilities. Workshop runs approx 45 min
"Planning For Today’s Alternative Lifestyle Families" When it comes to family matters, many of the legal, financial and quality of life considerations that apply to same sex couples can be confusing. Understanding how to protect your loved ones in this special needs situation can be confusing and complex. Addressing concerns now and in the future concerning children and their safety along with ensuring their emotional and physical well being is important for every family. Topics include guardianship of children, purchasing real estate and owning joint assets, the importance of wills and trusts, Health Information Privacy Act and allowing life partners to make critical health and legal decisions on their partners behalf, pension protection strategies, employer benefits, and retirement planning for same sex couples. Workshop runs approx 1:30 min.
For more information on any of these topics please call our main office and schedule a consultation. All workshops are copywrighted and presented by trained staff members of the Preventive Family Support Services.
xxx The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter
________________________________________
GUARDIANSHIP
For many parents, making decisions for children with special needs is a lifelong commitment. A Parents goal is always to take actions toward ensuring their loved ones health, well being, safety and ability to be cared for and age with dignity and respect. In order for parents to maintain their decision making authority in the lives if their loved ones, some may have to obtain legal guardianship of their own children as they reach the age of majority.
This can be a foreign concept to many, since caring for their children have become second nature to them. Many find out the hard way that they are legally locked out of the decision making process when they try to act in a situation and are denied information or other privlileges they once easily accessed. Some examples of these situations are when making health care decisions, advocating at school for their children, making legal decisions, and in all financial matters.
Parents may find their once willing doctors, not so willing to share information on a patient who has turned the age of majority, or their childs school unwilling to discuss her report card or IEP with mom and dad becuase the student is 19 and an adult.
There are different forms of guardianship and not all children with special needs should have guardians, but a good majority should and as parents who care for their children seek solutions to this dilemma, they should be aware of their rights,or lack there of , and their childrens rights, which are ever increasing with age, regardless of a diagnosis.
For help understanding more about Guardianship proceedings where you live and to discuss the pros and cons of guardianship for your loved one, attend on of our upcoming workshops or call our main office to schedule an orientation.
FOCUS ON FAMILY
Each month we look to bring you inspirational stories from our families. Each of them have unique, wonderful and loving children with special needs. This month we bring you our interview with Peter, a single dad raising his son MarcAnthony on his own since MarcAnthony was a baby. Peter is an amazing dad, hard working father, and is dedicated to providing the best care and every opportunity available to his son. Peter is an EMT for the NY Fire Dep't. His son MarcAnthony was diagnosed at birth with Cerebral Palsy, developmental delays, Asthma and is legally blind. We knew his story would serve as an inspiration to single parents raising special needs children everywhere. Thanks Peter!
Peter &
MarcAnthony
Question: Tell us about the people in MarcAnthony’s Life:
Peter: I get a lot of help from my mother, sister and my nephew. They are very supportive of me and Marc and love us very much. They have been there through it all and if anything ever happened to me, I know they would be there for him 100%. When I want to get away for the weekend to refresh my mind and have some down time they will stay with Marc and I feel comfortable with the level of care they can provide him and it gives me peace of mind.
Question: What are some of the pressures you feel as a single parent?
Peter: At times I feel overwhelmed but I can’t let those feelings take over. What I do every day is for Marc's best and as long as I take good care of him, we will be all right. Since he was a small baby his mother has had no contact with him and takes no part in the joy of sharing his life. She has left this responsibility up to me, and I do all I can to fend for Marc's rights as a special needs child. At this point I really feel that Marc is better off with me instead of with his mother because she should naturally want to be a part of his life, yet, she chooses not to be there for him.
Question: Tell us about a typical day at your house
Peter: A normal day starts at 5 am with me getting up for work and then getting Marc ready starting at 5:30 am . I have to get him cleaned up and dressed with his backbrace, and then I have to put him into his wheelchair. My mom comes to make breakfast and I feed him and spend time with him before school so by 6am I'm feeding him breakfast and between 6:20-6:30am I'm out the door to be at work by 7:30 am . Every morning before I go I make sure that Marc has all his school stuff in his school bag and has his jacket on and he is ready. By 7:15 am my mother takes him down on the elevator (if it is working) to meet the school bus by 7:30am . Then Marc is at school until 3pm and usually by 4:15 pm Marc is home and I'm home shortly after. We go over what went on at school and then it’s time for dinner.
Question: What do you and MarcAnthony do at home? What things does he like to get into?
Peter: When he is home from school Marc is playing, watching tv and being a little kid. He does not get any home work but I reinforce the things he learned during the day to make sure he spends time studying and so I know what’s going on at school. Marc loves interactive toys, games, tv, music .going outside, swimming in the pool. He is very smart for a child with special needs.
Question: What are some of the challenges raising your son who is growing into a young man?
Peter: Giving Marc a bath is very hard since I live in an apartment I do not have room for special equipment to lift him. I have to lift him myself and put him in the tub to bathe him and lift him out to dry him in the bedroom. To stay on track, I try to do this every night between 7:00 to 7:30 pm . As he gets older and heavier it is tuff, but I am strong and he need me to do this for him. When Marc gets sick his cold triggers his Asthma which takes a lot out of him. If he is getting sick he needs me and I would have to stay home and treat him with his asthma meds. Usually after a few treatments, time with me and some rest my mother can stay with until he is 100% so I don't have to miss work a lot. Needless to say I do not get a lot of chances to take vacations because most of my vacation time is used on Marc when he gets sick. I do enjoy scuba diving and have a time share I try and get to. I have friends I am close to who know me and Marc and enjoy spending time with is and really support me as a dad.
Question: What are some of the challenges you have faced as a parent that other parents might be going through?
Peter: I think hardest thing I had to deal with over the year is the not knowing. Where to find the information needed to help me and my son has never easy. There are not many support groups where we live and the ones we have found are at times that I can not make.
Any advice for single parents and parents in general raising special needs children?
Get informed! I think the best thing to do is to ask your child school about programs, get a social worker to help you and talk to as many resources as you can. Get connected to other parents and find ways to be involved with networks of information.
Wed:11/12 @ 6 pm Garden City, NY Guardianship in NYS. An overview workshop for parents and caregivers. For location and detailed information RSVP to (516) 521 1099
Thursday 11/20 @ 12 pm Garden City, NY. Our core workshop: Addressing the long term legal, financial and quality of life issues families with special needs children and adults face. For location and detailed information RSVP to (516) 521 1100.
Thursday 11/27
HAPPY
THANKSGIVING
Tues 12/2 @ 5 PM Garden City, NY. Protecting benefit eligibility: A focus on special needs trusts, wills and legal family planning. For location and detailed information RSVP to (516) 521 1100.
PFSS Parent Training & Provider Training Courses
The Preventive Family Support Services is a 501c3, Not-for-profit division of the Special Needs Advisory Partners and is dedicated to bringing free, educational parent and provider trainings to schools, support groups, lectures,PTA's and our local community. If you would like to schedule a workshop, please call our main office to set up a meeting to discuss the group ypu'd like us to present to.
WORKSHOP SERIES
“Securing the long term quality of life for disabled individuals” Our core workshop and critical first step introduction to families addressing many areas of concern. Topics include information on understanding federal government benefits, navigating the SSI maze, addressing the legal and financial concerns of families with special needs children and adults, the importance of a properly drafted last will and testament, creating a letter of intent, aging out of the school system, finding support groups and lay advocates and the HIPA Act and it’s impact on the health care decisions of disabled individuals. Workshop runs approx 1:30 min
“Understanding benefit eligibility guidelines-Applying for OMRDD services in NY”
A workshop designed to introduce families to the benefits and entitlements that are offered to individuals with a formal diagnosis through OMRDD, The Office Of Mentally Retarded and Developmentally Delayed Persons in NYS. This workshop explains who and hat DDSO’s are and how they help, it defines the role of an MSC and advocates. It covers misconceptions of the “Medicaid” and “Medicaid Waiver” programs and helps families understand that benefit eligibility is NOT always based on income, but can be based on diagnosis. We address the importance of obtaining and securing eligibility, keeping eligibility and how even for families earning an above average income, there are services and programs that money can’t buy that loved ones must remain eligible for. Workshop runs approx 1 hr.
“An overview of Guardianship in NYS” this workshop explains the concept of becoming guardian of your own child with a disability at age of majority. We discuss the pro’s and con’s while we remain neutral and supportive of a families choice. We discuss how to choose a proper guardian, considerations when living as an elderly disabled individual, alternative housing opportunities, and the actual filing and surrogates court process entailed when acquiring guardianship. Workshop runs approx 1:30 min
"A Helping Hand For MSC's" Introducing Medicaid Service Coordinators and their agencies to PFSS and the resources we can provide to their consumers. This brief introduction helps MSC's identify specific needs of consumers that PFSS and SNAP can train and assist them with. MSC's who would like to participate in our helping hands program get weekly updates with articles, information, events, and training materials as another resource to provide their consumers. Workshop runs approx. 45 minutes
“Creating Your Letter of Intent" This workshop is by invitation only and is offered to families who have come through the process of securing their legal documents. Having the Letter of intent without securing legally the security of lived ones is offering false security. Our workshop is an interactive exercise where we help our families create their special needs loved ones' handbook. Topics include, transfer of critical and vital information, future planning for your loved ones' quality of life, on boarding a guardian to the real day to day care your loved one needs, documenting ideals for your loved ones' as they age, feelings on health, dating opportunities, religion, sex life, housing opportunities, finances and more. Workshop takes place over 2 days for 4 hours each session.
"Legacy Giving" Doing well by doing good. The basics behind tax favorable and philanthropic giving. Leveraging your assets and estate plan as a way to create a lifetime of care and consideration for a person, organization, or foundation. This workshop is done for individuals and families as part of their estate planning process. It has also been presented to philanthropic benefactors invited by non profit organizations as part of aligning their vision for continued support, and creative legacy gifting opportunities. Presentation time varies.
“The ABC’s of IEP’s”, The Americans With Disabilities Education Act Allows disabled individuals access to a free, fair public education. Our workshop addresses the importance and distinction between private vs in district evaluations, What to look for in an IEP (Individualized Education Plan), understanding the diagnosis and it’s prescribed care in a educational facility, what to do if your childs Individualized Education Plan is being “broken”, a parents rights to mediation and advocacy in the school districts, legal intervention methods, private placement schools and educational/living facilities. Workshop runs approx 45 min
"Planning For Today’s Alternative Lifestyle Families" When it comes to family matters, many of the legal, financial and quality of life considerations that apply to same sex couples can be confusing. Understanding how to protect your loved ones in this special needs situation can be confusing and complex. Addressing concerns now and in the future concerning children and their safety along with ensuring their emotional and physical well being is important for every family. Topics include guardianship of children, purchasing real estate and owning joint assets, the importance of wills and trusts, Health Information Privacy Act and allowing life partners to make critical health and legal decisions on their partners behalf, pension protection strategies, employer benefits, and retirement planning for same sex couples. Workshop runs approx 1:30 min.
For more information on any of these topics please call our main office and schedule a consultation. All workshops are copywrighted and presented by trained staff members of the Preventive Family Support Services.
xxx The Special Needs Advisory & Preventive Family Support Services November Monthly Newsletter
________________________________________
GUARDIANSHIP
For many parents, making decisions for children with special needs is a lifelong commitment. A Parents goal is always to take actions toward ensuring their loved ones health, well being, safety and ability to be cared for and age with dignity and respect. In order for parents to maintain their decision making authority in the lives if their loved ones, some may have to obtain legal guardianship of their own children as they reach the age of majority.
This can be a foreign concept to many, since caring for their children have become second nature to them. Many find out the hard way that they are legally locked out of the decision making process when they try to act in a situation and are denied information or other privlileges they once easily accessed. Some examples of these situations are when making health care decisions, advocating at school for their children, making legal decisions, and in all financial matters.
Parents may find their once willing doctors, not so willing to share information on a patient who has turned the age of majority, or their childs school unwilling to discuss her report card or IEP with mom and dad becuase the student is 19 and an adult.
There are different forms of guardianship and not all children with special needs should have guardians, but a good majority should and as parents who care for their children seek solutions to this dilemma, they should be aware of their rights,or lack there of , and their childrens rights, which are ever increasing with age, regardless of a diagnosis.
For help understanding more about Guardianship proceedings where you live and to discuss the pros and cons of guardianship for your loved one, attend on of our upcoming workshops or call our main office to schedule an orientation.
FOCUS ON FAMILY
Each month we look to bring you inspirational stories from our families. Each of them have unique, wonderful and loving children with special needs. This month we bring you our interview with Peter, a single dad raising his son MarcAnthony on his own since MarcAnthony was a baby. Peter is an amazing dad, hard working father, and is dedicated to providing the best care and every opportunity available to his son. Peter is an EMT for the NY Fire Dep't. His son MarcAnthony was diagnosed at birth with Cerebral Palsy, developmental delays, Asthma and is legally blind. We knew his story would serve as an inspiration to single parents raising special needs children everywhere. Thanks Peter!
Peter &
MarcAnthony
Question: Tell us about the people in MarcAnthony’s Life:
Peter: I get a lot of help from my mother, sister and my nephew. They are very supportive of me and Marc and love us very much. They have been there through it all and if anything ever happened to me, I know they would be there for him 100%. When I want to get away for the weekend to refresh my mind and have some down time they will stay with Marc and I feel comfortable with the level of care they can provide him and it gives me peace of mind.
Question: What are some of the pressures you feel as a single parent?
Peter: At times I feel overwhelmed but I can’t let those feelings take over. What I do every day is for Marc's best and as long as I take good care of him, we will be all right. Since he was a small baby his mother has had no contact with him and takes no part in the joy of sharing his life. She has left this responsibility up to me, and I do all I can to fend for Marc's rights as a special needs child. At this point I really feel that Marc is better off with me instead of with his mother because she should naturally want to be a part of his life, yet, she chooses not to be there for him.
Question: Tell us about a typical day at your house
Peter: A normal day starts at 5 am with me getting up for work and then getting Marc ready starting at 5:30 am . I have to get him cleaned up and dressed with his backbrace, and then I have to put him into his wheelchair. My mom comes to make breakfast and I feed him and spend time with him before school so by 6am I'm feeding him breakfast and between 6:20-6:30am I'm out the door to be at work by 7:30 am . Every morning before I go I make sure that Marc has all his school stuff in his school bag and has his jacket on and he is ready. By 7:15 am my mother takes him down on the elevator (if it is working) to meet the school bus by 7:30am . Then Marc is at school until 3pm and usually by 4:15 pm Marc is home and I'm home shortly after. We go over what went on at school and then it’s time for dinner.
Question: What do you and MarcAnthony do at home? What things does he like to get into?
Peter: When he is home from school Marc is playing, watching tv and being a little kid. He does not get any home work but I reinforce the things he learned during the day to make sure he spends time studying and so I know what’s going on at school. Marc loves interactive toys, games, tv, music .going outside, swimming in the pool. He is very smart for a child with special needs.
Question: What are some of the challenges raising your son who is growing into a young man?
Peter: Giving Marc a bath is very hard since I live in an apartment I do not have room for special equipment to lift him. I have to lift him myself and put him in the tub to bathe him and lift him out to dry him in the bedroom. To stay on track, I try to do this every night between 7:00 to 7:30 pm . As he gets older and heavier it is tuff, but I am strong and he need me to do this for him. When Marc gets sick his cold triggers his Asthma which takes a lot out of him. If he is getting sick he needs me and I would have to stay home and treat him with his asthma meds. Usually after a few treatments, time with me and some rest my mother can stay with until he is 100% so I don't have to miss work a lot. Needless to say I do not get a lot of chances to take vacations because most of my vacation time is used on Marc when he gets sick. I do enjoy scuba diving and have a time share I try and get to. I have friends I am close to who know me and Marc and enjoy spending time with is and really support me as a dad.
Question: What are some of the challenges you have faced as a parent that other parents might be going through?
Peter: I think hardest thing I had to deal with over the year is the not knowing. Where to find the information needed to help me and my son has never easy. There are not many support groups where we live and the ones we have found are at times that I can not make.
Any advice for single parents and parents in general raising special needs children?
Get informed! I think the best thing to do is to ask your child school about programs, get a social worker to help you and talk to as many resources as you can. Get connected to other parents and find ways to be involved with networks of information.
Monday, October 27, 2008
10 Myths About Autism
Experts Examine Misconceptions About Autism
By LARA SALAHI and RADHA CHITALE
ABC News Medical Unit
Oct. 23, 2008 —
As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?
Click here to go to ABC News' On Call+ Autism page.
You will find many interesting articles: (http://abcnews.go.com/health/autism)
Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.
Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.
The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.
Myth: Autism is an emotional or mental health disorder.
While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.
"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."
Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.
"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.
Myth: There is an autism epidemic.
The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.
Visit the OnCall+ Autism Center
Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.
"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.
Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.
"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."
Myth: Autism can be cured.
Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.
"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.
Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.
According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.
In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.
"And that is definitely not a cure," he said.
Myth: Autism is the result of cold and unemotional parents.
In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.
However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.
"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."
Myth: Individuals with autism always have hidden or exceptional talents.
Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.
Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.
The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."
But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.
"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."
Myth: Repetitive or ritualistic behaviors should be stopped.
One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.
While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.
Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.
However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.
"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.
Myth: Individuals with autism are unable to build social relationships.
"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.
In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.
The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.
"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."
Myth: Autistic individuals are a danger to society.
"It is a disservice to think that all people with autism are dangerous," said Wagner.
The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.
However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.
By LARA SALAHI and RADHA CHITALE
ABC News Medical Unit
Oct. 23, 2008 —
As the number of Americans diagnosed with autism spectrum disorders climbs, so, too, does the number of questions surrounding this disorder. Namely, what is autism, and what is causing a rise in autism diagnoses among adults and children nationwide?
Click here to go to ABC News' On Call+ Autism page.
You will find many interesting articles: (http://abcnews.go.com/health/autism)
Amid these questions, television shows and magazines feature a barrage of stories and imagery -- families rallying for and against vaccines, debates between medical experts pointing to both genetic and environmental causes, and images of individuals diagnosed with autism who struggle to speak and function independently, while others can interact with others and are able to hold jobs. For many, these competing messages may make this already complex condition even more confusing.
Fortunately, doctors and researchers are learning more about the causes and characteristics of autism.
The following are answers to 10 common myths, that may help us better recognize the range of symptoms we call autism spectrum disorders.
Myth: Autism is an emotional or mental health disorder.
While physical or social behaviors of individuals with autism may suggest that they have a psychological disorder, autism is actually a biological illness that affects the brain's growth and development.
"In the case of autism, the parts of the brain that are most affected seem to impact three areas of functioning," said Michael Alessandri, executive director of the University of Miami's Center for Autism and Related Disabilities. "Social behavior, communication and restricted and repetitive rituals and routines are ways that the child or the adult with autism interact with the environment."
Although autism is now understood to be a neurodevelopmental disorder, Alessandri, an expert for ABCNews.com's OnCall+ Autism section, said autism can still be considered a complex disorder because its range of symptoms is so diverse.
"Scientists and clinicians now understand that autism is not a singular entity, but rather, a variety of syndromes that ... create the autism spectrum disorders," said Alessandri.
Myth: There is an autism epidemic.
The word "epidemic" often implies a sudden burst in the number of individuals within a fixed time who have, in this case, autism.
Visit the OnCall+ Autism Center
Although the CDC reports that one out of 150 children born have an autism spectrum disorder, some experts are quick to question whether a surge in autism cases is actually occurring. Some are more likely to link the upshot of numbers to the combination of a broader definition of autism, a wider spectrum, and an earlier diagnosis.
"The condition has not become more widespread, but there is more diagnosis of autism," said Dr. Bob Marion, director of Children's Evaluation and Rehabilitation Center at Albert Einstein College of Medicine in New York.
Sheila Wagner, assistant director of the Autism Center at Emory University in Atlanta, added that more awareness of symptoms has allowed more people to identify individuals who have autism.
"There's a lot of media exposure to autism, in television and movies," said Wagner. "This has made [autism] more recognizable in the lay population."
Myth: Autism can be cured.
Some parents may allude to a certain diet, medicine, or set of behavioral treatments that have cured their autistic children, where other parents may try the same mode of treatment and see no results. While there are treatments created to improve an autistic child's ability, there is no known cure for autism.
"We do know that with early intervention with younger children and Applied Behavioral Analysis, we can improve a child's functioning," said Marion.
Applied Behavior Analysis, or ABA, is one form of therapy for newly diagnosed children. It includes repeating behavioral activities to improve a child's social and physical functions.
According to Marion, there is no blanket treatment for autism, and it is up to the individual's doctor to assess what treatment will offer the best benefit for each autistic child.
In some cases, Marion said, behaviors, including eye contact, interaction with others and development of language skills, will significantly improve -- but the underlying biological disorder will not change.
"And that is definitely not a cure," he said.
Myth: Autism is the result of cold and unemotional parents.
In the 1940s, Austrian doctor Bruno Bettelheim theorized that autism was a result of parents, especially mothers, who did not love their children. Children in such situations would withdraw and become autistic, Bettelheim believed.
However, researchers have thawed the "refrigerator mother" theory. According to medical experts, a child's autism diagnosis has nothing to do with how the child is raised.
"We don't know if there are any things that a parent can do or not do, conclusively, will determine whether their child gets autism or not," said Dr. Daniel Geshwind, director of UCLA's neurogenetics program and center for autism research. "Most of the evidence right now points to there being a very strong genetic predisposition in most cases of autism, but not all."
Myth: Individuals with autism always have hidden or exceptional talents.
Stephen Wiltshire, 34, is best known as the human camera. He can replicate architectural designs and landscapes down to each blade of grass -- even if he is only given one opportunity to observe the area he is drawing. Wiltshire has reproduced panoramic scenes of Tokyo, Rome and London by memory after one short helicopter ride over each of the cities.
Wiltshire is an autistic savant. That is, he has extraordinary cognitive skills that allow him to recall details of designs, numbers and measurements that are normally considered too difficult to remember.
The concept of an autistic individual as a savant may have been popularized by Dustin Hoffman's character in the movie "Rain Man."
But while Marion acknowledges that there is a minority group of individuals with autism who have unusual islets of skills, savants are an unrealistic portrayal of the majority of individuals on the spectrum. He said most do not have talents or skills that distinguish themselves by extraordinary talents.
"There are strengths and weaknesses in every child," said Marion. "It's important for every child with autism to have a multidisciplinary evaluation by health professionals who have experience in assessing a child's skills and deficits, to come up with an educational plan that will benefit the child the most."
Myth: Repetitive or ritualistic behaviors should be stopped.
One of the classic indicators of autism is repetitive and ritualistic behaviors, according to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV), a physician's tool to diagnose autism.
While these behaviors -- which can include hand flapping, banging on walls or rocking back and forth -- may seem odd, they do have a purpose: they can be calming; they can feel good; and they may help the individual communicate with others, said Wagner.
Repetitive behaviors may only pose a problem if they begin interfering in family life or if they prevent those with autism from functioning independently, Wagner added.
However, according to Dr. Pauline Filipek, associate professor of pediatrics and neurology at the University of California, Irvine, a child may learn to outgrow repetitive behaviors.
"Often, as an individual gets older, they learn that such behaviors make them stand out in society, and they learn to miniaturize those behaviors," said Filipek.
Myth: Individuals with autism are unable to build social relationships.
"This is a generalization and needs to be individualized because the spectrum is so wide," said Marion.
In short, social relationships are possible for some individuals on the autism spectrum, but not for others on the most severe end of the spectrum, Marion said.
The DSM IV, which includes diagnosing guidelines for autism, lists "impairment in social interaction" as one indication that an individual can have an autism spectrum disorder. But not every child on the autism spectrum will have the same degree of difficulty connecting with others.
"At the most severe end of the spectrum, yes, that's true," said Marion. "But there is a multitude of children who have friends, and even some who do have close relationships."
Myth: Autistic individuals are a danger to society.
"It is a disservice to think that all people with autism are dangerous," said Wagner.
The idea rises from numerous news stories of individuals diagnosed with Asperger's syndrome, a high form of autism, who have been accused of burglary and, at times, murder.
However, if you look at the entire population of people on the autism spectrum, the number of people involved in crime is small, said Wagner. If someone with autism were to act out, it may be due to frustration or perhaps physical or emotional overstimulation, not necessarily malice, she said.
REFERENCE POINTS: Health Resources for Transitioning Youth
THE 2008 FACT SHEET ON HEALTH CARE ACCESS AND UTILIZATION: ADOLESCENTS AND YOUTH ADULTS This fact sheet contains the most recent available data on health insurance coverage, preventive and other health services, and unmet need among adolescents and young adults ages 12-24, including those with special health care needs. The fact sheet, produced by the National Adolescent Health Information Center at the University of California, San Francisco, with support from the Maternal and Child Health Bureau, highlights trends and presents data by age, gender, income level, and race and ethnicity. . The fact sheet is available at . http://nahic.ucsf.edu//downloads/HCAU2008.pdf A list of other NAHIC-produced briefs and fact sheets is available at http://nahic.ucsf.edu/index.php/data/article/briefs_fact_sheets
From: Monday Morning in Washington, DC
HEALTH COVERAGE IN COMMUNITIES OF COLOR: TALKING ABOUT THE CENSUS NUMBERS From Families USA, this 4-page document provides context to recent Census data. Although the numbers of uninsured declined between 2006 and 2007, the numbers are still considerably higher than in 2000. People and children of color remain more likely to lack health insurance than their non-Hispanic White peers. http://www.familiesusa.org/assets/pdfs/minority-health-and-the-census-numbers.pdf
TALKING WITH YOUR DOCTOR AND OTHER HEALTH CARE PROFESSIONALS
This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand their concerns, answer their questions and provide the information and supports they need to be more in charge of their own health. This video was developed by the Institute for Child Health Policy. The video can be viewed at http://video.ichp.ufl.edu/twyd.php
THIS IS HEALTH CARE TRANSITION
Developed by the Institute for Child Health Policy at the University of FL, this video is intended to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php ICHP has developed an online brochure that describes and provides access to all of their health care transition product and is available at: http://hctransitions.ichp.ufl.edu/hct-promo/
MY HEALTH, MY CHOICE, MY RESPONSIBILITY: A TRAINING PROGRAM ON HEALTH SELF-ADVOCACY
My Health, My Choice, My Responsibility is an 8-week training program written to promote health advocacy among adults with developmental disabilities. Each of its eight sessions covers a health area and focuses on making healthy decisions on a daily basis. The program also includes three tools designed to help participants take control of their health, including a tool for preparing for a medical appointment, record keeping of health needs and medical history, and a plan containing health goals that are developed over the course of the seminar. For more information go to http://www.wihd.org/matpub/matpub_index.html
From: the October 2008 NCPAD Monthly Newsletter
SINCE YOU'RE NOT A KID ANYMORE: IT'S TIME TO BE MORE IN CHARGE OF YOUR HEALTH CARE This 31 page booklet, also developed with funding from CMS, is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document. The booklet is available, as a PDF at:
http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
From: Health Care Transition for Youth with Special Needs Digest [transition@mchenet.ichp.ufl.edu]
IT'S TIME TO TRANSITION! A WORKBOOK FOR YOUNG ADULTS, THEIR FAMILIES, AND THEIR MEDICAL PROVIDERS This workbook was developed to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at:http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf
BUILD YOUR OWN CARE NOTEBOOK WEB SITE
A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family and can serve as a helpful tool for transitioning youth. For more information, go to http://www.medicalhomeinfo.org/tools/care_notebook.html
From: Monday Morning in Washington, DC
HEALTH COVERAGE IN COMMUNITIES OF COLOR: TALKING ABOUT THE CENSUS NUMBERS From Families USA, this 4-page document provides context to recent Census data. Although the numbers of uninsured declined between 2006 and 2007, the numbers are still considerably higher than in 2000. People and children of color remain more likely to lack health insurance than their non-Hispanic White peers. http://www.familiesusa.org/assets/pdfs/minority-health-and-the-census-numbers.pdf
TALKING WITH YOUR DOCTOR AND OTHER HEALTH CARE PROFESSIONALS
This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand their concerns, answer their questions and provide the information and supports they need to be more in charge of their own health. This video was developed by the Institute for Child Health Policy. The video can be viewed at http://video.ichp.ufl.edu/twyd.php
THIS IS HEALTH CARE TRANSITION
Developed by the Institute for Child Health Policy at the University of FL, this video is intended to help youth and young adults with chronic health conditions and their families be better prepared for adulthood, especially the move from pediatric to adult-oriented health care. This video is available on the web at: http://video.ichp.ufl.edu/tihct.php ICHP has developed an online brochure that describes and provides access to all of their health care transition product and is available at: http://hctransitions.ichp.ufl.edu/hct-promo/
MY HEALTH, MY CHOICE, MY RESPONSIBILITY: A TRAINING PROGRAM ON HEALTH SELF-ADVOCACY
My Health, My Choice, My Responsibility is an 8-week training program written to promote health advocacy among adults with developmental disabilities. Each of its eight sessions covers a health area and focuses on making healthy decisions on a daily basis. The program also includes three tools designed to help participants take control of their health, including a tool for preparing for a medical appointment, record keeping of health needs and medical history, and a plan containing health goals that are developed over the course of the seminar. For more information go to http://www.wihd.org/matpub/matpub_index.html
From: the October 2008 NCPAD Monthly Newsletter
SINCE YOU'RE NOT A KID ANYMORE: IT'S TIME TO BE MORE IN CHARGE OF YOUR HEALTH CARE This 31 page booklet, also developed with funding from CMS, is a health care transition guide for teens in middle school. It includes information and activities designed to help young teens with special health care needs take a more active role in their own health care. It is available for download as a full color PDF document. The booklet is available, as a PDF at:
http://hctransitions.ichp.ufl.edu/pdfs/cms_synaka_lowres_07.pdf
From: Health Care Transition for Youth with Special Needs Digest [transition@mchenet.ichp.ufl.edu]
IT'S TIME TO TRANSITION! A WORKBOOK FOR YOUNG ADULTS, THEIR FAMILIES, AND THEIR MEDICAL PROVIDERS This workbook was developed to help organize the medical transition process into a smooth and successful move from pediatric focused to adult focused health care. The workbook is available on the web as a PDF at:http://www.cdphe.state.co.us/ps/hcp/transition/workbook.pdf
BUILD YOUR OWN CARE NOTEBOOK WEB SITE
A major role of a care notebook is to help parents/caregivers maintain an ongoing record of their child's care, services, providers, and notes. This notebook is a great tool in empowering families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family and can serve as a helpful tool for transitioning youth. For more information, go to http://www.medicalhomeinfo.org/tools/care_notebook.html
Friday, October 24, 2008
Reaching an Autistic Teenager
Reaching an Autistic Teenager
By MELISSA FAY GREENE
Published: October 17, 2008
On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.
“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.
“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”
“What was disturbing you, Edwick?” Nelson asked.
“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”
“What’s upsetting about that?” Nelson asked.
Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.
“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”
“No, not the tornado!” Edwick yelled.
Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.
The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)
“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.
What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.
With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.
How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”
The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.
“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”
The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.
As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.
Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.
T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.
Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.
Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”
Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.
Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.
Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”
Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.
While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.
What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”
T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?
The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”
In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.
The mother smiles sadly, knowingly. “That would be nice,” she says.
“We’re going to build on what she does,” the doctor says.
The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.
“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”
“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”
The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.
“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.
The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.
“Good, good!” Dr. Greenspan cheers.
“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.
“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”
The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.
“Make it more complicated!” the psychiatrist pleads.
“Can we go give it to Daddy?” the mother asks.
The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.
The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.
The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.
Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”
Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”
Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”
One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”
He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.
“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”
“You really didn’t like that noise,” she agreed.
“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!
“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!
“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”
Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’
“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”
When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”
“What would it do, Sam?” Lucie asked, delighted.
After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.
Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”
Sam had replied: “Cow-colored.”
Lucie pushed poster board and colored pencils at Sam and said, “Show me.”
Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.
Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.
The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”
There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.
Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.
Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.
Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”
A version of this article appears in print on October 19, 2008, on page MM32 of the New York edition.
By MELISSA FAY GREENE
Published: October 17, 2008
On a typical Monday morning at an atypical high school, teenage boys yanked open the glass doors to the First Baptist Church of Decatur, Ga. Half-awake, iPod wires curling from their ears, their backpacks unbuckled and their jeans baggy, the guys headed for the elevator. Arriving at Morning Meeting in the third-floor conference room, Stephen, his face hidden under long black bangs, dropped into a chair, sprawled across the table and went back to sleep. The Community School, or T.C.S., is a small private school for teenage boys with autism or related disorders. Sleep disturbances are common in this student body of 10, so a boy’s staggering need for sleep is respected. Nick Boswell, a tall fellow with thick sideburns, arrived and began his usual pacing along the windows that overlook the church parking lot and baseball diamond. Edwick, with spiky brown hair and a few black whiskers, tumbled backward with a splat into a beanbag chair on the floor.
“O.K., guys, let’s talk about your spring schedules,” said Dave Nelson, the 45-year-old founding director. He wore a green polo shirt, cargo shorts and sneakers and had a buzz haircut and an open, suntanned face. After his son Graham, 19, was given a diagnosis of autism spectrum disorder (A.S.D.) as a young child, Nelson left the business world and went into teaching and clinical and counseling work. On that Monday, he was instantly interrupted.
“I had a very bad night!” Edwick yelled from the floor. “Nightmares all night!”
“What was disturbing you, Edwick?” Nelson asked.
“What do you think?” Edwick cried in exasperation. “It’s St. Patrick’s Day!”
“What’s upsetting about that?” Nelson asked.
Edwick dropped his shoulders to relay how tiring it was to have to explain every little thing. “Leprechauns,” he yelled.
“Oh,” Nelson said. “I thought maybe it was the tornado that hit downtown on Friday night.”
“No, not the tornado!” Edwick yelled.
Nick stopped pacing to comment: “Edwick’s not scared of tornados; he’s scared of leprechauns.” I burst out laughing and so did the faculty members, while Nelson seemed to relish the interruption rather than find it a hindrance to the morning routine. His hidden agenda was precisely to entertain outbursts like Edwick’s, while making room for a sardonic intelligence like Nick’s. No matter the stated purpose of Morning Meeting, the true purposes were always the same: conversation, debate, negotiation, compromise and the building of relationships. T.C.S.’s only serious admissions requirements are that a boy should have at least some functional language and that there’s a good chance he can become part of the “community” of the school name.
The group turned to registering for spring classes. In addition to biology, algebra 2/trigonometry, English literature and U.S. history, there were the electives: Dragon Lore, Comic Books, How to Shop for Bargains and the History of Snack Food. Past electives included All About Pirates, Spy Technology, Ping-Pong, Dog Obedience, Breaking World Records, Unusual Foods and Taking Things Apart. (“I just wish they’d come up with a second-quarter class, Putting the Things Back Together,” Nelson told me.)
“I knew it!” Edwick complained, mashing about on the beanbag chair. He was disappointed because no one picked the elective he’d proposed: the History of Meat.
What makes the Community School unusual is not its student body — plenty of schools around the country enroll teenagers with an autism spectrum disorder. But, like about only two dozen schools in the country, it employs a relatively new, creative and highly interactive teaching method known as D.I.R./Floortime, which is producing striking results among T.C.S.’s student body. (D.I.R. stands for developmental, individual differences, relationship-based approach.) The method is derived from the work of Stanley Greenspan, a child psychiatrist and professor of psychiatry, behavioral science and pediatrics at George Washington University, and his colleague Dr. Serena Wieder. D.I.R./Floortime can be effective with all kinds of children, whether they have developmental challenges or not. As applied by T.C.S., it is an approach that encourages students to develop their strengths and interests by working closely with one another and with their teachers. The goal for students is neurological progress through real-world engagement.
With the skyrocketing diagnoses of A.S.D.’s in recent years, parents and school systems are challenged as never before to find techniques to keep these teenagers engaged, productive and nondespairing. Boys with A.S.D. (they outnumber girls four to one) who were difficult to console, to teach, to restrain at age 4 or 8 can be nearly impossible for parents and teachers to manage and to steer at 14 and 18. While a 25-pound toddler’s tantrum is wearying, a 150-pound teenager’s tantrum is dangerous. Puberty and young adulthood take many of these young people unawares.
How best to serve this population remains a subject of debate, because autism is a “final common pathway” diagnosis, meaning children arrive here from different points of origin, are troubled by a wide variety of issues and respond to different strategies. “You meet one child with autism and, well, you’ve met one child with autism,” says Linda Brandenburg, the director of school autism services at the Kennedy Krieger Institute in Maryland. Given the wide range of expression in autism and related disorders, there is no one-size-fits-all intervention. “We now know that there are several different models that seem to work — some more behavioral, some more developmental, some more eclectic,” Dr. Fred R. Volkmar, director of the Yale Child Study Center, told me. “What we really need to be doing, what the law says, is design programs around the kids rather than force kids into a program.”
The vast majority of programs for autistic youth in the U.S. use an approach called Applied Behavior Analysis, in which teachers and therapists use well-established techniques of reward and punishment to shape a student’s actions toward goals like toilet training, learning vocabulary or completing a puzzle. A typical A.B.A. lesson rewards memorized responses, specific behaviors and compliance to external directives — “Pick up the fork, Jared.” An instructor may move the child’s arm, hand and fingers to model the desired behavior. The child is then rewarded — with praise, with hugs, with a treat — when he performs the act correctly. As the first method to work with profoundly self-absorbed children and to demonstrate that progress could be made, A.B.A. — which came to national prominence in the late 1980s — has been a lifesaver for countless families. Critics worry that the method focuses on modifying the symptoms rather than addressing the underlying disabilities, and many say they fear that A.B.A.-trained children often do not “generalize,” that is, take a behavior learned in one setting and apply it in another. A child may learn to make eye contact in response to “How are you?” and to reply, “Fine, how are you?” But such rote memorization does not give the child the intuition to know when a stranger is to be greeted warmly and when to be avoided, and it does not enable him to meet his grandmother with greater warmth than the grocer.
“All teachers and therapists use elements of behaviorism,” Nelson told me. “As an intervention for autism, the A.B.A. movement was one of the first to suggest how intensive the intervention has to be — maybe 40 hours a week — to see results. This notion of intensity has been valuable to everyone that followed.”
The Community School — with a teaching staff of 12 and a $25,000 tuition — employs the intensity but not the methodology of A.B.A. Rather than spend time on a student’s mastery of a skill preselected for him by an adult, the idea is to harness a student’s energy and desire to learn. As a student interacts with peers and teachers, solves problems and expresses his ideas, his behavior should naturally begin to lose its rough edges. The essence of Floortime is that a person learns best when self-motivated, when an inner drive sparks the acquisition of skills and knowledge.
As with A.B.A., achieving D.I.R./Floortime’s far-reaching goals for students requires intense interaction — a wooing of a child from his or her remove — for as many hours of the day as parents and teachers can physically sustain. Dr. Greenspan would like to see an autistic child productively interacting with an adult for most of his waking time, seven days a week. Those drained parents who have the means hire therapists and trained baby sitters to help them approximate that schedule, during either home-schooling days or out-of-school hours.
Because the goal of D.I.R./Floortime is the kindling of a student’s curiosity, intelligence, playfulness and energy, the lessons can take on a spontaneous, electric quality. I have seen sessions with young children during which the child and his or her therapist or parent tumbled across the house, behind the sofa, into closets or onto the porch, picking up balls, puppets, costumes, books and snacks along the way. At T.C.S., classes can look like debates between equals; school days can include board games, sports, plays, science experiments, music, art, ropes courses or rafting trips in which all students and teachers playfully compete, contribute and perform. All the boys at the school probably have average or better intelligence. Onlookers might call a few “high functioning” (though that adjective has no clinical meaning), and T.C.S. is an accredited high school and middle school, offering college prep and high-school courses to students able to complete a conventionally rigorous course of study. (Other students pursue less-demanding tracks oriented toward getting a G.E.D., attaining job skills or developing independent-living skills.) So it’s not all fun and social time. But rote learning is never the goal; the goal is that the students should be able to think, to feel, to communicate and to learn. Most of the kids are making the first friends of their lives here.
T.C.S. does not promise miracles. It does not promise to be a perfect fit for every teenager with an A.S.D. Dave Nelson does not invest great faith in the possibility of leaving the autism spectrum behind, no matter how much parents (like himself) would love to believe it. The breakthroughs at T.C.S. are subtle rather than headline-grabbing, noticeable at first only to the adults closest to the kids and to the students themselves. But for these families, any forward motion can inspire a moment of real hope and happiness, and quite remarkable progress happens every day.
Stephen, 17, a solidly built boy with a sweet face under a heavy thatch of bangs, entered T.C.S. in 2005 prone to blowups of alarming power. His parents adore their son and have been whipped about like sailboats by his furies. His first year at school, during group construction of an outdoor marble-run, a boy fumbled and a marble dropped. “I am going to assassinate him,” Stephen exploded. “I. Will. Behead. Him.” Stephen’s academics are top-notch, but the stance of the Community School is not to ignore a student’s psychological deficits while skipping ahead to schoolwork or life skills. It doesn’t matter that Stephen is at home with algebraic theorems if he is going to react like a toddler when ambushed by a mad or sad feeling.
Ty Martin, 14, is a cute and curly-haired guy who lives in terror of loud or strange noises. The faux thunderstorm in the produce aisles at the grocery store makes it difficult to take him shopping. A classmate’s coughing or a siren in the distance distracts him from schoolwork. His mother often was obliged to retreat to a windowless basement room at home, hugging and soothing her son when the outside world — especially lawn crews next door with leaf-blowers — overwhelmed him. “He doesn’t like crows,” Judy Martin told me last spring. “If crows are at a park, he’ll go from happy to berserk in five seconds. If we go to a restaurant, we’re all on edge, praying the bartender doesn’t turn on the blender.”
Sam Gross visited San Francisco with his mother two years ago at age 15. During a tour of Alcatraz, the handsome olive-skinned boy climbed a nearby fence and prepared to dive. Had his mother not spotted him and screamed, Sam would have been injured or killed by falling onto the rocks. But he was not trying to kill himself. He planned, as he explained in his monotone voice, to turn into a merman and swim back to the mainland.
Then he began to deteriorate. For two years, he spent every day in a ball under his blankets, rising only to pound either side of his head with such ferocity that two bald spots bloomed under his fists, then dangerously swelled. He had to be sedated to stop the self-battery. By the time Sam reached the Community School, he was nearly incommunicative. Whenever he began using his head like a punching bag, the teachers asked him to stop, and he did, but otherwise showed no sign that he heard them.
Students arrive at T.C.S. trailing long histories of school failure and humiliation, suspension, expulsion, truncated transcripts, social isolation, victimization, self-loathing, suicidal ideation or years of home-schooling patched together by mothers forced to leave their jobs. “On our first visit with Dave Nelson, Ty started screaming: ‘I hate this place! I want to leave right now!’ ” Judy Martin says. “Most principals don’t want to work with a kid like that. But what I saw on Dave Nelson’s face was ‘I can work with a kid like this.’ ”
Many prospective parents begin to weep during their intake interviews with Nelson. For them and their children, this place represents something of a last chance.
While there is no direct relationship between Dr. Stanley Greenspan and the nation’s D.I.R./Floortime schools, other than one of mutual respect, the theoretical underpinning of these schools relies on his argument that human intelligence itself is constructed out of the warm back-and-forth signaling between child and parent, beginning at birth. Jean Piaget located a child’s investigation of causality in the material world, for example, with experiments like pulling a string attached to a bell, but Greenspan and his colleague Serena Wieder see these insights occurring in the emotional realm, when a baby learns that his or her smile brings the parent’s smile. Brain development is not a solo pursuit but a rich and complex flowering that occurs only in the hothouse of human relationships.
What does this have to do with autism? A child born at risk of an A.S.D. has cognitive and sensitivity issues that inhibit engagement. Pleasures enjoyed by a typical baby can upset him: a mother’s face seems too close, so the infant cranes away; the father’s tickles may produce fear reflexes rather than laughter. Meanwhile the sunlight is burning his eyes, the diaper scrapes his skin and the baby begins avoiding interaction with people at the cost of normal brain development.
I begin to picture the brain metaphorically as a tangled ball of Christmas lights. When you plug it in, there are strands that light up perfectly and there are dark zones where a single burned-out bulb has caused a line to go out. If the bulb for Exchanging-Smiles-With-Mother doesn’t light up, then Empathy won’t be kindled farther along the strand, or Playfulness, or Theory of Mind (the insight that other people have different thoughts from yours). The electrical current won’t reach the social-skill set, the communication skills, creativity, humor or abstract thinking.
According to the D.I.R. perspective, emotion is the power source that lights up the neural switchboard. D.I.R./Floortime’s goal is to connect autistic students with other people as a way of fueling their cognitive potential and giving them access to their own feelings, desires and insights. The latest findings in the field of neuroplasticity support D.I.R.’s faith in the capacity of the human brain to recoup and to compensate for injury and illness. “Early intervention is optimal,” Dr. Greenspan told me, “but it’s never too late. The areas of the brain that regulate emotions, that sequence ideas and actions and that influence abstract thinking keep growing into a person’s 50s and 60s.”
T.C.S. students are masters of withdrawal, and for the D.I.R. model to work, each student must be an active partner in his own education. But how do you ignite the enthusiasm of an autistic teenager who has long since walled himself off from the outside world; who uses little language or who screeches in random yelps or vulgarities; who flips out when pried away from his computer game; who speaks to you, if at all, in long monologues on arcane subjects with zero interest in your response? What do you use as a staging ground for a relationship with an increasingly furious and despairing adolescent?
The Floortime technique might be summed up as: “Follow the child’s lead and challenge the child.” It is most easily visible on the videotapes documenting Dr. Greenspan’s 25 years of clinical work with younger children. In each video, the gangly psychiatrist crouches on the floor of his comfortably shabby home office in Bethesda, calling instructions to parents about how to catch the attention of and interact with their remote-seeming children. “I treat everything the child does as having a reason — to feel calmer, for example, or to feel excited,” Dr. Greenspan told me. “Often the parents have notions of what the child should be doing, so they’re trying to control the child rather than build on the child’s natural interests.”
In my favorite video, a 30-something husband and wife flank their 4-year-old daughter; the husband, in round horn-rim glasses, sits forward on the sofa; his wife curls up on the floor nearby. Their daughter, with chopped-off blond hair and a doughy face, looks to me like Helen Keller, pre-Anne Sullivan. Seeming almost blind, deaf, mute and mentally retarded, she bounces from sofa to table to wall. She is without affect, her movements ungainly and her eyes unfocused. She makes slurping sounds, as if she has reached the bottom of a drink with a straw. “We’re going to try to get a continuous flow of back-and-forth going here,” Dr. Greenspan says.
The mother smiles sadly, knowingly. “That would be nice,” she says.
“We’re going to build on what she does,” the doctor says.
The girl is flapping a plastic toy in her hand. “Will she give it to Daddy?” Dr. Greenspan asks.
“Can I see that?” the father asks as the child roams the room. The child seems not to hear him. But then the girl, traveling by, indifferently drops the toy into his outstretched hand. Delighted, the father says: “There’s a star on it! And there’s a triangle!”
“Here you’re losing her, Daddy,” Dr. Greenspan says, and sure enough, the girl escapes and heads for a wall. “If you’re trying to educate her with complicated language that she’s not processing, then you’re going to lose her. You want to change your orientation from educating her to interacting with her.”
The child picks up a bright plastic flowered eyeglass case off a table and twiddles it. “See if she’ll give it to you,” the doctor prompts.
“Can you give it to Mommy?” the mother asks, and surprising everyone, the girl hands it over. “Thank you!” the mother says.
The mother hides the eyeglass case behind her on the floor. The girl treads in place for a moment, swinging her arms and slurping. She begins to laugh a strange, heaving laugh. “Huh-huh-huh!” The mother moves a little to show that she’s sitting on the eyeglass case, and the child dives for it.
“Good, good!” Dr. Greenspan cheers.
“Can I have it back?” the mother asks. The mother hides it inside her own sweater, half-exposed.
“Let her get it! Let her get it! Let her get it!” Dr. Greenspan says in excitement. It is of paramount importance to him that the child initiates her own ideas and motor plans. Every time her parents start to physically turn or steer her, he stops them, crying: “Let her do it! Let her do it!”
The mother next slips the eyeglass case into the bib of her daughter’s pink overalls, and the girl stops in her tracks. Dr. Greenspan is prepared to leap over furniture to block the parents from giving her a clue. Suddenly, slowly, the girl’s gaze drops. . . . She finds the eyeglass case! In her own pants! “Ooh! Ooh! Ooh! Ooh!” she says.
“Make it more complicated!” the psychiatrist pleads.
“Can we go give it to Daddy?” the mother asks.
The mother walks over to the father, who hides the eyeglass case in his shirt. The girl freezes in confusion. The psychiatrist loves a moment like this and tries to prolong it. He sees momentary frustration as a vitally creative occasion. He urges parents to be “playfully obstructive.” He’s not after results; he wants to see a child thinking. “She can do this,” he advises them.
The girl slowly looks down, plucking at her overalls. For a moment it seems they have lost her. But — no — she’s looking inside the bib, where she last found the eyeglass case. It’s not there. Again she freezes. She must be thinking, “Mommy went to Daddy. . . . ” Slowly she turns toward her father.
The expression on the father’s face, when his daughter plucks the eyeglass case from his shirt, is of heartbreaking gratitude. A moment later, he pitches the eyeglass case over her head to his wife. The girl turns and beholds her beaming mother holding the eyeglass case. “Ooh! Ooh! Ooh!” she says. Mom pitches the case back to Dad, and when the child turns to run to her father, she skips in her delight, her face radiant, making a hoarse sound of laughter.
Children with autism — especially Asperger’s — are famous for all-consuming interests in Matchbox cars, bus maps, train schedules, oscillating fans, Civil War battles, baseball statistics, black holes, dinosaurs, chess or Star Wars. While most programs try to discourage these obsessions, D.I.R./Floortime argues that they can offer openings into relationships. Does this work? Parents of T.C.S. students say that it does. Most speak in glowing terms about the school’s lifesaving impact on their families. Outside experts are more cautious, reluctant to give any one approach a gold medal when there are so many variables, including the profiles of the students admitted to T.C.S. in the first place. “Stanley Greenspan is an engaged and enthusiastic clinician,” Dr. Volkmar says. “People are attracted to Floortime because it is respectful of the child and the child’s wishes. He wants to follow the child’s lead. I would imagine that more able children do produce leads that are worth following — I’ve seen kids with Asperger’s do well in Montessori programs too — but what if the child isn’t doing much that you’d want to follow? I wonder if following the lead of a child who’s doing nothing but body rocking results in a roomful of people all body rocking with him.”
Dave Nelson says: “T.C.S. is a school, so I’d argue that our success should be measured by how well we educate our students. The boys have far better attendance rates than at their previous schools. They have far better emotional regulation — many could not attend school before due to their outbursts; while here, emotional regulation is core curriculum. Many were depressed to the point of suicidal ideation at their previous schools; that’s not happening here. Some were victims of bullying, some were aggressors at their previous schools; not here. All our parents report that their children are functioning better, are happier and are better communicators, thinkers and learners.”
Judy Martin says: “My son Ty’s progress has been monumental. He doesn’t cry in dark basements anymore. He isn’t entirely focused on himself; he is learning real empathy. He never liked school, and now he loves it. Every day this past summer he asked me when he could be with Dave Nelson. This is a child who never cared about teachers or friends. Now he tells me he loves them. I chatted with Stephen the other day by the vending machine as his money got stuck. He was problem-solving rather than blowing up. We rode the elevator together, chatting about the problem, while he decided to go find a teacher to help him.”
One morning at school, the fire alarm went off. My first thought — like everyone’s — was, Oh, my God —Ty! We descended the stairs to the parking lot. Ty was within a circle of T.C.S. teachers. “It was Elana!” he yelled to everyone about one of the teachers, who had been trying to prepare a snack for her class. “Elana burnt the popcorn in the microwave!” Poor Elana Himmelfarb, covering her face, not knowing whether to laugh or cry, said again and again, “I am just so, so, so, so sorry, Ty.”
He was trying to forgive her, but he kept asking, “Elana, why did you make the fire alarm go off?” His face was red, his curls were plastered back with perspiration and he was rocking a bit, long after the alarm had been silenced. Back upstairs, when the smoke cleared, Ty huddled in a beanbag chair with Rebecca Richter, one of the teachers, beside him.
“I hate that noise,” Ty said. “That’s a bad noise. That has a witch’s voice.”
“You really didn’t like that noise,” she agreed.
“This can NEVER HAPPEN AGAIN,” he sobbed, demanding that Rebecca promise him. “This will never happen again, will it? This can never happen!
“I need you to call my mom,” he said, weeping. “I’m having a very bad day. Will you call my mom? I need her to come get me.” I imagine a region of Ty’s brain blinking hard, a fistful of tiny red lights setting one another off: Panic! Panic!
“If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” Nelson told me later. “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.”
Gently Richter moved Ty from unreality (“the witch’s voice”) onto solid ground (“I’m having a bad day”). Given the tools to hang on, Ty survived until the end of the school day. And the breakthroughs continued. “When Ty came home that day, we talked through the events, as the school has trained me to lovingly do,” Judy Martin told me recently, “and Ty said, ‘Mom, I feel bad for Elana, because she didn’t mean to do it.’
“ ‘Do you think she felt embarrassed?’ I asked him, and he said yes. This moment was huge: Ty has always struggled with seeing the viewpoint of others, and here he was able to take a moment that frightened him and look at it from Elana’s viewpoint. We go to restaurants all the time now, and Ty couldn’t care less about the blenders. Lawn crews arrive next door, and they don’t faze him.”
When Sam Gross, now 17, arrived at T.C.S., he tripped along down the hall on the balls of his feet, rolling his head, thrumming on his chest with his fingers, humming to himself, lost in other worlds. The only points of entry he offered were during serious flights of fancy. “What this school needs,” he murmured in his low, resonant voice one day to a teacher, Lucie Canfield, “is a magic cabinet.”
“What would it do, Sam?” Lucie asked, delighted.
After a long pause he said, “Turn Sam into Samantha.” Sam wanted to travel back in time, he explained, to when he was a little girl; then he changed his mind and wanted to use it for teleporting.
Sam’s parents and his psychiatrist were initially less than enthusiastic about the magic cabinet: “Let’s not get started with this stuff here,” they said. But Lucie had already asked Sam, “What would a magic cabinet look like?”
Sam had replied: “Cow-colored.”
Lucie pushed poster board and colored pencils at Sam and said, “Show me.”
Dave Nelson agreed. This was the clearest opening they’d had from Sam Gross. Everything Nelson knew about Floortime told him to follow the boy’s lead. “Let’s see where this goes,” he told Sam’s parents.
Sam finished several quite beautiful drawings of a tall, rectangular closet. It would have a blue curtain and a bell stand on top, with a chain he would pull when he was finished transforming or teleporting. Nelson brought in a refrigerator box, and Lucie and Sam painted it in a nice Holstein pattern of black on white. “We made a point of always saying to Sam not that we were building a magic cabinet, but that we would pretend with him,” Lucie tells me. “I explained that magicians used tricks to make people think they disappeared.” T.C.S. would facilitate this exploration, with Sam, of the frontier of fantasy, with the expectation that he would encounter some reality along the way.
The special day arrived, and Sam stepped into the cabinet and drew the curtain. Dave waved a magic wand and read words Sam had written: “Abracadabra-a-whirl. Let Sam turn into a girl.”
There was silence inside the box. Then Sam called, “Do it again!” Dave chanted the words again. Silence. Then: “Let Lucie do it!” The teacher took the wand and gave it a try.
Sam peeked out, still male. “This is not the right cabinet for turning into a girl,” he said in consternation. “This is the cabinet that turns you into Paul McCartney.” He exited. At home that night, Sam looked up magicians in the Yellow Pages and booked one to come to school the next day. Dave Nelson canceled. It was time for reality to intervene.
Back at school, Sam spent the week focusing on how to teleport out of the cabinet to surprise folks in the cafeteria on the ground floor. Then one day he made an unusual request of Lucie Canfield: he needed help cutting a back door in the box that would allow him to slip away like a stage magician. It was a striking and brave acknowledgment of the material world.
Sam never staged his trick, as it was real magic that excited him. And he muttered, over the next few weeks, seditious thoughts along the lines of, What kind of school is this that doesn’t provide a real magician? The Magic Cabinet still stands in the art room, bell-towered and cow-colored. Many of the students enjoy stepping behind the blue curtain now and then for a moment of quiet remove from the world or to prepare to burst back upon the room in an assumed role. “It’s expanded from a product of Sam’s fantastic imagination to something of real purpose,” Judy Martin told me. “Kids peek out their heads as characters from books they’ve been reading, changing their voices and facial expressions.” The Magic Cabinet has come to stand for what the Community School offers these students: the possibility of transformation.
Melissa Fay Greene is the author of “There Is No Me Without You: One Woman’s Odyssey to Rescue Her Country’s Children.”
A version of this article appears in print on October 19, 2008, on page MM32 of the New York edition.
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