PARALLEL PLAY
Growing Up With Undiagnosed Asperger’s
By Tim Page
Illustrated. 197 pages. Doubleday. $26.
Related
‘Parallel Play’ (September 3, 2009)
The first prediction came true, and then some: Mr. Page won a Pulitzer Prize for his music criticism at The Washington Post (he was also a critic at The New York Times). He has written such a superbly incisive biography of the once-forgotten novelist Dawn Powell that she is now well remembered, and edited volumes of Powell’s diaries and letters. Now, in his mid-50s, he has written an improbably lovely memoir about the loneliness that has made him feel throughout his life that he is “not quite a mammal.”
“In the years since the phrase became a cliché, I have received any number of compliments for my supposed ability to ‘think outside the box,’ ” Mr. Page writes in “Parallel Play” (an expanded version of material published in The New Yorker). But for him thinking inside the box is at best a mechanical exercise based on mimicry; at worst it’s an impossibility.
In fascinatingly precise detail and often to pricelessly funny effect, he describes ways in which his efforts to feign normalcy have backfired. Recalling an adolescent clinch with a young woman who asked if he’d still care about her the next day, he says he pondered the question, then told her truthfully that he had no idea. “Wrong answer,” he wryly recalls.
When he was 45, Mr. Page learned that he had the autistic disorder called Asperger’s syndrome. He was relieved to know that his condition was quantifiable and that others share the same general symptoms. But he was also much too smart and self-aware to feel true kinship with other Aspies, as he calls them.
“We are not always natural companions,” he writes. “If, say, you introduce an Aspie devotee of antique piano recordings to one whose passion is vacuum cleaners, chances are that the meeting will result in two uncomprehending and increasingly agitated monologues.”
As for his own social skills, he has been married twice and is the father of three sons. Yet he still writes that “it would be easier for me to improvise an epic poem before a sellout crowd at Madison Square Garden than to approach an attractive stranger across the room and strike up a conversation.” About his professional abilities, he acknowledges that he was lucky to find work like teaching and writing music criticism. He would have fared horribly with a job in sales.
Mr. Page’s devotion to music first manifested itself when he was very young. He named a stuffed animal after the tenor and film actor Mario Lanza. (Among this book’s many pleasures are Mr. Page’s wildly eclectic tastes and his fondness for the endearingly second rate.)
He loved records. When given an elementary school assignment to “write about something we had at home,” he reeled off from memory the precise selections, composers, singers and dates of each band on an opera anthology ranging from 1909 to 1932. He also loved relics of bygone time, ingested horehound drops as snack food and was using the world “talkie” about movies in 1965.
Among Mr. Page’s extremely colorful examples of his obsessive, controlling boyhood behavior is his having gotten hold of — and then re-edited, following a scene-by-scene description of the original from a library book — an eight-millimeter print of the 12-minute silent film “The Great Train Robbery” because he knew that a distributor had tampered with the original. And there’s more: in 1967 he was directing his own films and became the subject of a prizewinning documentary called “A Day With Timmy Page.” Mr. Page’s wing-nut film fanaticism led him to discover Bob Dylan’s “Bringing It All Back Home” not for the obvious reasons but because Louella Parsons’s biography of Jean Harlow appears amid the coffee-table clutter on the album’s cover.
With seemingly effortless grace this book moves back and forth between Mr. Page’s very private idiosyncrasies and those of the wider culture in which he came of age. The fear and rigid conventionality of the 1950s were relatively easy for him. The ’60s took more effort, but he worked hard to adapt. He was sufficiently well assimilated to go with the flow, grow long hair and get a job in a record store, “where I became the very model of the snide know-it-all counterperson we have all met and loathed.”
“Parallel Play” is illustrated by a series of expertly chosen photos of the author that amount to a kind of time-lapse photography: from a little boy making an open-mouthed goldfish grimace (“Try as I might, I couldn’t remember how to smile”) to a beret-wearing, contented-looking, broadly smiling professor. He is on a park bench in Baltimore. Thanks to the candid, companionable voice of his memoir, the implied invitation to sit down and discuss, oh, maybe the later Beach Boys records (which he marvelously describes as “vaporous, ethereal, elaborately ornamented musical clockworks, distinguished by a blossoming tenderness and sheer sonic splendor”) is all but irresistible.
But there is also a strain of mournfulness running through this book. It’s not about Asperger’s, but it is intensified by the peculiar nature of Mr. Page’s Asperger-governed perceptions. Tirelessly logical, sometimes agonizingly so, he lives life in an extra dimension, with a sense of time that irrevocably links past and present, living and dead, ardent love affairs and broken ones.
The people who left him — and it seems to have happened a lot — are still with him. The schoolmate who died in his teens has become, in Mr. Page’s imagination, his aging contemporary. The music heard at a long-ago party is still playing. And the hardest job of Mr. Page’s life, as “Parallel Play” conveys even in its brightest moments, has been to struggle for a way to make peace with it all.
http://www.nytimes.com/2009/09/03/books/03maslin.html?_r=1&scp=1&sq=parelell%20play%20book%20review&st=cse
Tuesday, September 8, 2009
Tuesday, August 25, 2009
Kulanu's camp within a camp and Camp Outlook 2009
Kulanu’s eight weeks of summer camp will come to a close this week on August 25th Thirty children with special needs were served by Kulanu’s unique camp experience known as a “camp within a camp”. Kulanu shares facilities and activities with Camp Hillel at the Hebrew Academy of the Five Towns and Rockaway. Several Kulanu campers were “mainstreamed” into Camp Hillel being supported by a trained shadow.
This year’s camp added a new group for older campers, dubbed Camp Outlook. Campers were afforded a variety of challenging activities to help with team building and socialization. Kayaking, hikes in local nature preserves, harvesting eggs from chickens, planting vegetables, rocketry lessons, and trips were some of the “out of the box” activities for the teens.
In cooperation with the Rockaway Waterfront Alliance , our group participated in a community service project that involved cleaning up beach and dune areas in Far Rockaway. Jonathan Cooper, Kulanu’s Director of Community and Inclusion Services praised the campers stating, “I am proud that our campers donated their time and energy to improvements in the Rockaway community. They worked hard as a group and felt good about their accomplishments”.
Read a parent letter to Jonathan about her son’s summer experience at Camp KULANU!
The program you have there is truly amazing, and the kids, especially my XXXXX, woke up in the morning and was so excited to go each day!! This was the first experience he has had going on the same bus with my other boys and it was very special for him. He didn't feel "different". He loved seeing my kids during the day at camp and being in an environment with other typical children.
Your staff at Kulanu/Hillel was also amazing. Highly experienced professionals, wanting only the best for each child.. going out of their way to make that happen. And of course all your staff so loving and caring and making each child feel special.
It’s so hard with a special needs child and what Kulanu does, the amazing program you run does so much for the kids. I can’t thank you enough for everything you do, for caring when most people don’t, and putting so much time and effort to help enrich the lives of those kids who need that special attention and care. That one week at Kulanu/Hillel was a week filled with fun and games and playing but also helped XXXXX with his independence, self esteem and feeling "normal" like everyone else. And for that we will always be grateful.
Thanks again
XXXXX XXXXX
Parent
If you would like to learn more about Kulanu’s “camp within a camp” program we invite you to visit the camp blog at http://www.kulanucamp.blogspot.com/
Monday, August 24, 2009
Autistic Teens Master Social Cues, Find Friends
By THE ASSOCIATED PRESS
Published: August 21, 2009
LOS ANGELES (AP) -- Thirteen-year-old Andrea Levy ticked off a mental list of rules to follow when her guest arrived: Greet her at the door. Introduce her to the family. Offer a cold drink.
Above all, make her feel welcome by letting her choose what to do.
''Do you want to make pizza now or do you want to make it later?'' the lanky, raven-haired teen rehearsed in the kitchen, as her mother spread out dough and toppings.
This was a pivotal moment for Andrea, a girl who invited just one acquaintance to her bat mitzvah.
Andrea has autism, and socializing doesn't come naturally. For the past several weeks, she's gone to classes that teach the delicate ins and outs of making friends -- an Emily Post rules of etiquette for autistic teens.
For Andrea, this pizza date is the ultimate test.
The bell rings. The door opens. Can she remember what she needs to do?
More important, will she make a friend?
Even for socially adept kids, the teen years, full of angst and peer pressure, can be a challenge. It's an especially difficult time for kids with autism spectrum disorders, a catchall term for a range of poorly understood brain conditions -- from the milder Asperger's syndrome to more severe autism marked by lack of eye contact, poor communication and repetitive behavior such as head-banging.
An estimated 1 in 150 American children has some form of autism. There's no known cure. Some research suggests autistic kids who get help early can overcome some of their deficits. But the social skills they learn as a toddler may not be so useful to a teen.
''A lot of our kids need a tune-up. They need new skills to help them survive in their new social world,'' said clinical psychologist Elizabeth Laugeson of the University of California, Los Angeles, who runs a 3 1/2-month friendship program for high-functioning autistic teens like Andrea.
Growing up, Andrea hardly had friends at all. They either moved away or grew tired by her inability to emotionally connect.
When she was 18 months old, her parents noticed something was amiss. Instead of babbling, she would cry or scream to get attention. She had no desire to play, even with her older brother.
Some doctors said not to worry; others thought she had a speech impairment.
None of the answers made sense to Andrea's parents until two medical experts, including a pediatrician who specialized in developmental disorders, diagnosed her as autistic.
The family soon enrolled Andrea in special play therapy.
''We try and help her make friends, but she's always a step behind her peers,'' said her mother, Gina Levy.
In some respects, Andrea is a typical teenage girl who is crazed about celebrity gossip magazines, romance novels, drama and chorus. But she can be withdrawn and doesn't always get the subtleties of body language and other nonverbal signs.
Whenever she gets stuck in a conversation, she tends to stare, making people around her uncomfortable. She doesn't mean to be impolite -- it's just her way of watching and learning.
''I know I'm weird and I know I'm not normal,'' said Andrea, who looks like a young Anne Hathaway with braces. ''I've always known I'm not normal.''
Andrea found company from nine other high-functioning autistic teens who enrolled in a 14-week friendship boot camp earlier this year. More than 100 teens have graduated from the UCLA Program for the Education and Enrichment of Relational Skills, or PEERS for short, which costs $100 a session and is covered by many insurers.
Unlike other autism interventions, parents also must participate. They learn to become social coaches for their children so that their new skills can be retained when the program is over.
Every week, Laugeson, a peppy clinical psychologist known as ''Dr. Liz,'' leads the students through a maze of social survival skills: how to have a two-way conversation, how to trade information to find common interests, how to gracefully enter a conversation and how to be a good host. In class, the teens role-play with one another and also must practice what they've learned outside of class in weekly homework assignments.
Laugeson peppers the lessons with friendly reminders about proper etiquette:
''Don't be a conversation hog.''
''Give a cover story for why you are calling.''
''Don't be an interviewer.''
''Say you're sorry when you make someone angry, sad or upset.''
''You need to trade information at least 50 percent of the time during the get-togethers.''
Earlier this year, Laugeson published a study in the Journal of Autism and Developmental Disorders on how the parent-involved training has worked so far. In a study of 33 autistic teens, those who went through the program had more friends come to their houses than those who did not.
''There isn't much research on social group training that incorporates parents. That's a key factor for success,'' said Barbara Becker-Cottrill, who heads the West Virginia Autism Training Center at Marshall University. She has no connection with PEERS, but has reviewed Laugeson's research. ''Parents are children's first and probably best teachers.''
Despite the gains, Laugeson said the program is not a cure-all. Parents know this and don't expect their children to blossom into social butterflies overnight.
Andrea's mother has two goals: ''I hope she becomes a better conversationalist and feels more comfortable around her peers.''
Andrea's journey through an unfamiliar social world has been filled with some stumbles.
During a role-playing exercise, she was paired with a classmate to talk about their favorite book. Andrea was so eager to share her love of ''Gone with the Wind'' that she lapsed into a two-minute monologue about the plot. A counselor stepped in and reminded her not to be a ''conversation hog.''
One of Andrea's early attempts to inject herself into an existing conversation revealed some awkwardness. As a group of classmates chatted away about an animated movie, Andrea stood aloof, avoiding eye contact and unsure of what to do. Laugeson pulled her aside, advised her to listen and find a pause.
By the time Andrea rejoined the group, the discussion had switched to macadamia nuts. Andrea saw an opening and chimed in: ''Well, I've tried macadamia nuts and they're pretty good. When I was little, I would eat a lot.''
As time went on, Andrea's confidence improved. Through practice, she has let go of her tendency to be an interviewer during phone calls. On her own, she came up with the idea of asking the kids who were signing her yearbook to jot down their phone numbers too, a ploy that won her praise from the counselors and gave her a pool of potential friends to call.
Other teens in the class also progressed, but at a slower pace.
A fellow 13-year-old, Elias Cazares Jr., was diagnosed with autism two years ago. He displays more outward signs of the disorder -- rocking back and forth, constantly blinking, fidgeting with his face. Elias is obsessed with video games and talks of nothing else.
Unlike Andrea who got therapy growing up, this is the first time Elias has had professional help.
At times the pressure is too much. One day after class, Elias had a meltdown and refused to do the following week's homework -- calling someone outside of the group. Elias confided to Laugeson that he was teased at school and did not want to befriend the bullies. She calmed him down and said he could dial a cousin instead.
Despite the struggles, Elias' father is proud of the small steps he's taken: He recently called his neighbor to schedule a get-together. He also started making small talk with a younger kid in his hip-hop class, but he's been too afraid to ask for his phone number.
''What I want for him is a more normal life, to have at least one or two friends,'' said Elias Cazares Sr.
As the teens hone their bonding skills, parents gather separately for their own lesson.
UCLA postdoctoral fellow Alex Gantman, ''Dr. Alex,'' runs the parent session. It is a chance for them to talk about their kids' problems and progress and for Gantman to give pointers on helping the teens navigate their social surroundings.
One hard truth to face: There's a 50-50 chance that a kid will be rejected by peers, Gantman said, and it's OK to let them know that.
He points out that follow-up phone calls are critical in a budding friendship.
''Teens move on really quickly. Somebody else gets their attention and boom, they're gone unless you really develop a strong friendship bond,'' he said.
Gantman is working to expand the training to young autistic adults. They often struggle with dating skills as portrayed in the summer romance movie, ''Adam,'' about a young man with Asperger's who falls in love with his neighbor.
The PEERS program deals only with friendships, and teens must use the skills they learn in class in the real world. As part of their homework during the last month of the training, they had to play host to potential friends outside of the group.
Andrea invited over a fellow drama classmate with something in common. Both had a digestive problem that meant they couldn't eat foods containing wheat. So the two girls were going to make a gluten-free pizza.
Before the guest arrived, Andrea, dressed in a denim skirt and blouse, went over the steps of being a good host. The door bell buzzed. Her ponytailed guest was five minutes early and wearing a shy smile.
After exchanging pleasantries, the two gathered in the kitchen. Andrea got off to a slow start, standing at times with her arms crossed in front while her mother chatted away.
Then, she remembered her hosting duties and asked if the classmate wanted to add the pizza toppings first.
The guest deferred. ''You can go first.''
Andrea demonstrated: ''So you put a little bit of sauce ... and sprinkle on the cheese.''
''Perfect,'' the classmate replied.
After pizza, Andrea, with some prompting from her mother, asked what to do next.
The guest was indifferent so the two migrated to Andrea's room to watch a movie. After they got bored, they headed to the living room to play video games where Andrea got a chance to practice good sportsmanship.
Despite beating her guest in almost every round, Andrea threw out words of praise: ''Good job'' and ''Come on. You can do this.''
''You did well,'' Andrea said after winning the last round.
The two haven't hung out since the culinary experience. It's been an up-and-down time. But Andrea managed to have four get-togethers with a girl she met in chorus. And she's felt those familiar teen pangs of loss when she was stood up by another girl.
The older, wiser Andrea shook it off. She focused on a new set of possible friends she met while awaiting her turn to dive at the local swimming pool.
After overhearing that her schoolmates were on Facebook, she persuaded her mother to let her create a profile. She sent out ''a gazillion friend requests'' hoping a few will bite.
She has 33 friends and counting.
Published: August 21, 2009
LOS ANGELES (AP) -- Thirteen-year-old Andrea Levy ticked off a mental list of rules to follow when her guest arrived: Greet her at the door. Introduce her to the family. Offer a cold drink.
Above all, make her feel welcome by letting her choose what to do.
''Do you want to make pizza now or do you want to make it later?'' the lanky, raven-haired teen rehearsed in the kitchen, as her mother spread out dough and toppings.
This was a pivotal moment for Andrea, a girl who invited just one acquaintance to her bat mitzvah.
Andrea has autism, and socializing doesn't come naturally. For the past several weeks, she's gone to classes that teach the delicate ins and outs of making friends -- an Emily Post rules of etiquette for autistic teens.
For Andrea, this pizza date is the ultimate test.
The bell rings. The door opens. Can she remember what she needs to do?
More important, will she make a friend?
Even for socially adept kids, the teen years, full of angst and peer pressure, can be a challenge. It's an especially difficult time for kids with autism spectrum disorders, a catchall term for a range of poorly understood brain conditions -- from the milder Asperger's syndrome to more severe autism marked by lack of eye contact, poor communication and repetitive behavior such as head-banging.
An estimated 1 in 150 American children has some form of autism. There's no known cure. Some research suggests autistic kids who get help early can overcome some of their deficits. But the social skills they learn as a toddler may not be so useful to a teen.
''A lot of our kids need a tune-up. They need new skills to help them survive in their new social world,'' said clinical psychologist Elizabeth Laugeson of the University of California, Los Angeles, who runs a 3 1/2-month friendship program for high-functioning autistic teens like Andrea.
Growing up, Andrea hardly had friends at all. They either moved away or grew tired by her inability to emotionally connect.
When she was 18 months old, her parents noticed something was amiss. Instead of babbling, she would cry or scream to get attention. She had no desire to play, even with her older brother.
Some doctors said not to worry; others thought she had a speech impairment.
None of the answers made sense to Andrea's parents until two medical experts, including a pediatrician who specialized in developmental disorders, diagnosed her as autistic.
The family soon enrolled Andrea in special play therapy.
''We try and help her make friends, but she's always a step behind her peers,'' said her mother, Gina Levy.
In some respects, Andrea is a typical teenage girl who is crazed about celebrity gossip magazines, romance novels, drama and chorus. But she can be withdrawn and doesn't always get the subtleties of body language and other nonverbal signs.
Whenever she gets stuck in a conversation, she tends to stare, making people around her uncomfortable. She doesn't mean to be impolite -- it's just her way of watching and learning.
''I know I'm weird and I know I'm not normal,'' said Andrea, who looks like a young Anne Hathaway with braces. ''I've always known I'm not normal.''
Andrea found company from nine other high-functioning autistic teens who enrolled in a 14-week friendship boot camp earlier this year. More than 100 teens have graduated from the UCLA Program for the Education and Enrichment of Relational Skills, or PEERS for short, which costs $100 a session and is covered by many insurers.
Unlike other autism interventions, parents also must participate. They learn to become social coaches for their children so that their new skills can be retained when the program is over.
Every week, Laugeson, a peppy clinical psychologist known as ''Dr. Liz,'' leads the students through a maze of social survival skills: how to have a two-way conversation, how to trade information to find common interests, how to gracefully enter a conversation and how to be a good host. In class, the teens role-play with one another and also must practice what they've learned outside of class in weekly homework assignments.
Laugeson peppers the lessons with friendly reminders about proper etiquette:
''Don't be a conversation hog.''
''Give a cover story for why you are calling.''
''Don't be an interviewer.''
''Say you're sorry when you make someone angry, sad or upset.''
''You need to trade information at least 50 percent of the time during the get-togethers.''
Earlier this year, Laugeson published a study in the Journal of Autism and Developmental Disorders on how the parent-involved training has worked so far. In a study of 33 autistic teens, those who went through the program had more friends come to their houses than those who did not.
''There isn't much research on social group training that incorporates parents. That's a key factor for success,'' said Barbara Becker-Cottrill, who heads the West Virginia Autism Training Center at Marshall University. She has no connection with PEERS, but has reviewed Laugeson's research. ''Parents are children's first and probably best teachers.''
Despite the gains, Laugeson said the program is not a cure-all. Parents know this and don't expect their children to blossom into social butterflies overnight.
Andrea's mother has two goals: ''I hope she becomes a better conversationalist and feels more comfortable around her peers.''
Andrea's journey through an unfamiliar social world has been filled with some stumbles.
During a role-playing exercise, she was paired with a classmate to talk about their favorite book. Andrea was so eager to share her love of ''Gone with the Wind'' that she lapsed into a two-minute monologue about the plot. A counselor stepped in and reminded her not to be a ''conversation hog.''
One of Andrea's early attempts to inject herself into an existing conversation revealed some awkwardness. As a group of classmates chatted away about an animated movie, Andrea stood aloof, avoiding eye contact and unsure of what to do. Laugeson pulled her aside, advised her to listen and find a pause.
By the time Andrea rejoined the group, the discussion had switched to macadamia nuts. Andrea saw an opening and chimed in: ''Well, I've tried macadamia nuts and they're pretty good. When I was little, I would eat a lot.''
As time went on, Andrea's confidence improved. Through practice, she has let go of her tendency to be an interviewer during phone calls. On her own, she came up with the idea of asking the kids who were signing her yearbook to jot down their phone numbers too, a ploy that won her praise from the counselors and gave her a pool of potential friends to call.
Other teens in the class also progressed, but at a slower pace.
A fellow 13-year-old, Elias Cazares Jr., was diagnosed with autism two years ago. He displays more outward signs of the disorder -- rocking back and forth, constantly blinking, fidgeting with his face. Elias is obsessed with video games and talks of nothing else.
Unlike Andrea who got therapy growing up, this is the first time Elias has had professional help.
At times the pressure is too much. One day after class, Elias had a meltdown and refused to do the following week's homework -- calling someone outside of the group. Elias confided to Laugeson that he was teased at school and did not want to befriend the bullies. She calmed him down and said he could dial a cousin instead.
Despite the struggles, Elias' father is proud of the small steps he's taken: He recently called his neighbor to schedule a get-together. He also started making small talk with a younger kid in his hip-hop class, but he's been too afraid to ask for his phone number.
''What I want for him is a more normal life, to have at least one or two friends,'' said Elias Cazares Sr.
As the teens hone their bonding skills, parents gather separately for their own lesson.
UCLA postdoctoral fellow Alex Gantman, ''Dr. Alex,'' runs the parent session. It is a chance for them to talk about their kids' problems and progress and for Gantman to give pointers on helping the teens navigate their social surroundings.
One hard truth to face: There's a 50-50 chance that a kid will be rejected by peers, Gantman said, and it's OK to let them know that.
He points out that follow-up phone calls are critical in a budding friendship.
''Teens move on really quickly. Somebody else gets their attention and boom, they're gone unless you really develop a strong friendship bond,'' he said.
Gantman is working to expand the training to young autistic adults. They often struggle with dating skills as portrayed in the summer romance movie, ''Adam,'' about a young man with Asperger's who falls in love with his neighbor.
The PEERS program deals only with friendships, and teens must use the skills they learn in class in the real world. As part of their homework during the last month of the training, they had to play host to potential friends outside of the group.
Andrea invited over a fellow drama classmate with something in common. Both had a digestive problem that meant they couldn't eat foods containing wheat. So the two girls were going to make a gluten-free pizza.
Before the guest arrived, Andrea, dressed in a denim skirt and blouse, went over the steps of being a good host. The door bell buzzed. Her ponytailed guest was five minutes early and wearing a shy smile.
After exchanging pleasantries, the two gathered in the kitchen. Andrea got off to a slow start, standing at times with her arms crossed in front while her mother chatted away.
Then, she remembered her hosting duties and asked if the classmate wanted to add the pizza toppings first.
The guest deferred. ''You can go first.''
Andrea demonstrated: ''So you put a little bit of sauce ... and sprinkle on the cheese.''
''Perfect,'' the classmate replied.
After pizza, Andrea, with some prompting from her mother, asked what to do next.
The guest was indifferent so the two migrated to Andrea's room to watch a movie. After they got bored, they headed to the living room to play video games where Andrea got a chance to practice good sportsmanship.
Despite beating her guest in almost every round, Andrea threw out words of praise: ''Good job'' and ''Come on. You can do this.''
''You did well,'' Andrea said after winning the last round.
The two haven't hung out since the culinary experience. It's been an up-and-down time. But Andrea managed to have four get-togethers with a girl she met in chorus. And she's felt those familiar teen pangs of loss when she was stood up by another girl.
The older, wiser Andrea shook it off. She focused on a new set of possible friends she met while awaiting her turn to dive at the local swimming pool.
After overhearing that her schoolmates were on Facebook, she persuaded her mother to let her create a profile. She sent out ''a gazillion friend requests'' hoping a few will bite.
She has 33 friends and counting.
Wednesday, July 29, 2009
New York State Access Pass
An Access Pass permits a resident of New York State with a permanentdisability (partially defined below) free use of parks, historic sites andrecreational facilities operated by the New York State Office of Parks,Recreation and Historic Preservation and the NYS Department of EnvironmentalConservation. The pass holder may have free use of facilities operated bythese offices, for which there is normally a charge for example, parking,camping, greens fees, swimming. The Pass, however, is not valid at anyfacility within a park operated by a private concern under contract to theState, or for a waiver of fees such as those for seasonal marina dockage,for a group camp, for reservation of a picnic shelter, for performing artsprograms, for consumables (i.e. firewood, electric, or gas) forcampsite/cabin amenities, or for fees related to campsite/cabin reservationsand registrations.To qualify for an Access Pass, an applicant must be a resident ofNew York State and must provide proof of disability, in the form ofcertification for an appropriate agency (defined in the application) or by aphysician. A disability includes: Blindness, Developmental Disability,Physical Disability requiring physical assistance, wheelchair confinement,prosthetic devices. Refer to the Access Pass application for more completeinformation.To request an application, contact NYS Office of Parks andRecreation and Historic Preservation, Access Pass, Albany, NY 12238 or call518-474-2324.
Tuesday, July 28, 2009
Restrictive Diets May Not Be Appropriate for Children With Autism
July 28, 2009
Restrictive Diets May Not Be Appropriate for Children With Autism
By RONI CARYN RABIN
Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted.
Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight.
The study, published on Monday in the journal Pediatrics, is the first to look at the incidence of gastrointestinal problems in an autistic population, according to the paper’s first author, Dr. Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic. She suggested that autistic children should only be put on restrictive wheat-free or dairy-free diets after having appropriate diagnostic tests done.
“There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism,” she said. “The diets are not easy to follow and can sometimes cause nutritional deficiencies.”
The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomitin.g Feeding issues and picky eating were also common. Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period.
About 34 percent of the autistic children were affected by constipation, compared to 17.6 percent of the comparison group, while 24.5 percent of the autistic children had feeding issues and were selective in their eating, compared with only 16 percent of the non-autistic group.
But very few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.
Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.
Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.
Restrictive Diets May Not Be Appropriate for Children With Autism
By RONI CARYN RABIN
Many parents of autistic children have put their children on strict gluten-free or dairy-free diets, convinced that gastrointestinal problems are an underlying cause of the disorder. But a new study suggests the complicated food regimens may not be warranted.
Researchers at the Mayo Clinic reviewed the medical records of over 100 autistic children over an 18-year period and compared them to more than 200 children without the disorder. The scientists found no differences in the overall frequency of gastrointestinal problems reported by the two groups, though the autistic children suffered more frequently from bouts of constipation and were more likely to be picky eaters who had difficulty gaining weight.
The study, published on Monday in the journal Pediatrics, is the first to look at the incidence of gastrointestinal problems in an autistic population, according to the paper’s first author, Dr. Samar H. Ibrahim, a pediatric gastroenterologist at the Mayo Clinic. She suggested that autistic children should only be put on restrictive wheat-free or dairy-free diets after having appropriate diagnostic tests done.
“There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism,” she said. “The diets are not easy to follow and can sometimes cause nutritional deficiencies.”
The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomitin.g Feeding issues and picky eating were also common. Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period.
About 34 percent of the autistic children were affected by constipation, compared to 17.6 percent of the comparison group, while 24.5 percent of the autistic children had feeding issues and were selective in their eating, compared with only 16 percent of the non-autistic group.
But very few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.
Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.
Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.
Monday, July 20, 2009
Celexa May Not Help Kids With Autism
Celexa May Not Help Kids With Autism
06.01.09, 04:00 PM EDT
Study finds no benefit, and more side effects, but not all agree
MONDAY, June 1 (HealthDay News) -- In contrast to the assumptions of some doctors, new research suggests that the antidepressant Celexa does not help relieve repetitive behaviors often seen in children and teens with autism.
But the findings still need to be confirmed by other studies, and at least one autism specialist said the drug has worked well in his patients of preschool age, who are younger than those in the study.
"The jury is still out on how autism should be treated," said the specialist, Dr. Andrew Zimmerman, a pediatric neurologist and director of medical autism research at the Kennedy Krieger Institute in Baltimore.
Antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, are a common treatment for autism and given to perhaps 30 percent of children with the condition, said Dr. Bryan King, lead author of the study. Other common treatments, he said, include antipsychotic drugs, which calm people who use them, and stimulants such as Ritalin, which reduce hyperactivity and impulsive behaviors.
Celexa, also known by the generic name citalopram, is lesser known than similar antidepressants such as Prozac and Paxil. But it's easier to prescribe to autistic children because it comes in a liquid form, meaning that parents don't have to force their children to take pills, said King, a researcher and director of psychiatry and behavioral medicine at Seattle Children's Hospital and the University of Washington.
Also, the drug spends less time in the body before being flushed out, making it easier for doctors to quickly adjust the dosage, he said.
King's research team assumed that Celexa reduces symptoms of autism in children, such as repetitive motions, but they wanted to understand more about its powers.
"We didn't expect it to work for everyone, but we were hoping that we'd be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be," he said.
They randomly gave either 16.5 milligrams, on average, of Celexa or a placebo to 149 children with autism who were 5 to 17 years old. The children took the drug or fake drug for three months, and 123 of them finished the study.
The number of children who improved -- defined as not engaging in as many repetitive behaviors -- was about a third in both groups.
In other words, Celexa appeared to make no difference compared with a placebo. And children on Celexa were more likely to suffer from apparent side effects such as diarrhea, insomnia, hyperactivity and repetition of movements, the study found.
In a statement, Forest Laboratories, the maker of Celexa, said that it "was not involved in this study and therefore cannot provide comment."
The results are in the June issue of Archives of General Psychiatry.
The finding raises questions about whether similar antidepressants are also not providing benefit, or as much benefit as doctors had assumed, King said.
Zimmerman, the Baltimore autism specialist, said he's successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.
"If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors," he said. "The kids are more attentive."
More information
The U.S. National Institute of Neurological Disorders and Stroke has more on autism.
06.01.09, 04:00 PM EDT
Study finds no benefit, and more side effects, but not all agree
MONDAY, June 1 (HealthDay News) -- In contrast to the assumptions of some doctors, new research suggests that the antidepressant Celexa does not help relieve repetitive behaviors often seen in children and teens with autism.
But the findings still need to be confirmed by other studies, and at least one autism specialist said the drug has worked well in his patients of preschool age, who are younger than those in the study.
"The jury is still out on how autism should be treated," said the specialist, Dr. Andrew Zimmerman, a pediatric neurologist and director of medical autism research at the Kennedy Krieger Institute in Baltimore.
Antidepressants known as selective serotonin reuptake inhibitors, or SSRIs, are a common treatment for autism and given to perhaps 30 percent of children with the condition, said Dr. Bryan King, lead author of the study. Other common treatments, he said, include antipsychotic drugs, which calm people who use them, and stimulants such as Ritalin, which reduce hyperactivity and impulsive behaviors.
Celexa, also known by the generic name citalopram, is lesser known than similar antidepressants such as Prozac and Paxil. But it's easier to prescribe to autistic children because it comes in a liquid form, meaning that parents don't have to force their children to take pills, said King, a researcher and director of psychiatry and behavioral medicine at Seattle Children's Hospital and the University of Washington.
Also, the drug spends less time in the body before being flushed out, making it easier for doctors to quickly adjust the dosage, he said.
King's research team assumed that Celexa reduces symptoms of autism in children, such as repetitive motions, but they wanted to understand more about its powers.
"We didn't expect it to work for everyone, but we were hoping that we'd be able to drill down into the population for whom it was very helpful and begin to identify the predictor of what a positive response would be," he said.
They randomly gave either 16.5 milligrams, on average, of Celexa or a placebo to 149 children with autism who were 5 to 17 years old. The children took the drug or fake drug for three months, and 123 of them finished the study.
The number of children who improved -- defined as not engaging in as many repetitive behaviors -- was about a third in both groups.
In other words, Celexa appeared to make no difference compared with a placebo. And children on Celexa were more likely to suffer from apparent side effects such as diarrhea, insomnia, hyperactivity and repetition of movements, the study found.
In a statement, Forest Laboratories, the maker of Celexa, said that it "was not involved in this study and therefore cannot provide comment."
The results are in the June issue of Archives of General Psychiatry.
The finding raises questions about whether similar antidepressants are also not providing benefit, or as much benefit as doctors had assumed, King said.
Zimmerman, the Baltimore autism specialist, said he's successfully treated younger autistic children, ages 3 to 5, with the drug. He added that he uses smaller doses, which appear to not create as many side effects.
"If you start at a very low dose and build it up slowly, you see improvements in mood and decreases in repetitive behaviors," he said. "The kids are more attentive."
More information
The U.S. National Institute of Neurological Disorders and Stroke has more on autism.
Monday, July 13, 2009
News from Disability Scoop
Disability Scoop Email News: Friday, July 10 , 2009
To check out these headlines and more, visit DisabilityScoop.com everyday for the latest in developmental disability news. Like what you see here? Feel free to forward this email to your friends and colleagues. And, if you haven't already, click here to register with Disability Scoop, it's free!
Latest Headlines:
Long-Term Care Enters Health Reform DebateJuly 10, 2009White House officials tell Disability Scoop the president supports the Community Choice Act, but are mum on including it in health care reform.
Children Often Age 3 Or More Before Fragile X ConfirmedJuly 9, 2009Despite increased awareness, there’s been practically no change in the age of diagnosis over the last seven years, a study finds.
Beware Of Free Drug Samples, Consumer Group SaysJuly 9, 2009Think twice before accepting free samples of drugs like Adderall XR, Concerta and Strattera, Consumer Reports is warning.
Push For Autism Insurance Mandate Shifts Into High GearJuly 8, 2009An ad campaign launched Wednesday by Autism Speaks urges Congress to include autism insurance coverage in its health care reform efforts.
Autism Brings Moms A Whole New Level Of Stress, Study SaysJuly 8, 2009Mothers of children with autism experience more stress than mothers of kids with other types of developmental delay.
Man With Down Syndrome To Be Honored At All-Star GameJuly 8, 2009A man with Down syndrome will be one of 30 heroes honored by People Magazine and Major League Baseball at the league’s All-Star Game.
Disability Groups Unite Behind Sotomayor ConfirmationJuly 8, 2009More than two dozen national disability organizations are asking the Senate to confirm Sonia Sotomayor’s nomination to the Supreme Court.
The Scoop:
Scoop Essentials: Preventing Violence, Abuse And NeglectJuly 7, 2009People with developmental disabilities can be seen as easy prey. Learn how to avoid being victimized from Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities. Check out what Fitzsimons has to say and then click here to submit your own questions to her.
Advertise With Disability ScoopLooking to get noticed ? Our new advertising program for companies, organizations and professionals offers targeted solutions for any budget. To learn more click here.
Announcements & Reminders...
Announcing Scoop Group, The Disability Scoop Discussion ForumBe among the first to post on Disability Scoop's discussion forum. Ask for advice, advocate for your cause, share ideas. It's up to you. You came for the news. Now, stay for the community on Scoop Group, your new way to connect to the developmental disability community.
Also, Now Available: Video "The IEP And You" (View In English Or Spanish)Accepting Questions About IEPsRecently we brought you Sc oop Essentials: IEPs Inside Out, a frank discussion of IEPs with the head of one of the nation's largest special education programs, Donnalyn Jaque-Antón. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.Accepting Questions About Disclosing A DisabilityRecently we published Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition, a conversation about talking about disability with therapist Diane Smith. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.
Disability Scoop Is On Twitter!Follow Disability Scoop on Twitter where you can sign up to receive news alerts on your mobile phone as text messages. Click here to check it out and don't forget to become a follower.
Become A Fan On FacebookClick here to check out the Disability Scoop page on Facebook and be sure to become a fan.
About Disability ScoopDisability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others. Launched in 2008, Disability Scoop is the premier source for developmental disability news. Learn more at http://www.disabilityscoop.com.
To check out these headlines and more, visit DisabilityScoop.com everyday for the latest in developmental disability news. Like what you see here? Feel free to forward this email to your friends and colleagues. And, if you haven't already, click here to register with Disability Scoop, it's free!
Latest Headlines:
Long-Term Care Enters Health Reform DebateJuly 10, 2009White House officials tell Disability Scoop the president supports the Community Choice Act, but are mum on including it in health care reform.
Children Often Age 3 Or More Before Fragile X ConfirmedJuly 9, 2009Despite increased awareness, there’s been practically no change in the age of diagnosis over the last seven years, a study finds.
Beware Of Free Drug Samples, Consumer Group SaysJuly 9, 2009Think twice before accepting free samples of drugs like Adderall XR, Concerta and Strattera, Consumer Reports is warning.
Push For Autism Insurance Mandate Shifts Into High GearJuly 8, 2009An ad campaign launched Wednesday by Autism Speaks urges Congress to include autism insurance coverage in its health care reform efforts.
Autism Brings Moms A Whole New Level Of Stress, Study SaysJuly 8, 2009Mothers of children with autism experience more stress than mothers of kids with other types of developmental delay.
Man With Down Syndrome To Be Honored At All-Star GameJuly 8, 2009A man with Down syndrome will be one of 30 heroes honored by People Magazine and Major League Baseball at the league’s All-Star Game.
Disability Groups Unite Behind Sotomayor ConfirmationJuly 8, 2009More than two dozen national disability organizations are asking the Senate to confirm Sonia Sotomayor’s nomination to the Supreme Court.
The Scoop:
Scoop Essentials: Preventing Violence, Abuse And NeglectJuly 7, 2009People with developmental disabilities can be seen as easy prey. Learn how to avoid being victimized from Nancy Fitzsimons, an associate professor of social work at Minnesota State University, Mankato who specializes in abuse prevention for people with disabilities. Check out what Fitzsimons has to say and then click here to submit your own questions to her.
Advertise With Disability ScoopLooking to get noticed ? Our new advertising program for companies, organizations and professionals offers targeted solutions for any budget. To learn more click here.
Announcements & Reminders...
Announcing Scoop Group, The Disability Scoop Discussion ForumBe among the first to post on Disability Scoop's discussion forum. Ask for advice, advocate for your cause, share ideas. It's up to you. You came for the news. Now, stay for the community on Scoop Group, your new way to connect to the developmental disability community.
Also, Now Available: Video "The IEP And You" (View In English Or Spanish)Accepting Questions About IEPsRecently we brought you Sc oop Essentials: IEPs Inside Out, a frank discussion of IEPs with the head of one of the nation's largest special education programs, Donnalyn Jaque-Antón. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.Accepting Questions About Disclosing A DisabilityRecently we published Scoop Essentials: Disclosing Disability, Tackling A Dicey Proposition, a conversation about talking about disability with therapist Diane Smith. She is responding to reader questions. Click here to submit your own questions and check back soon to read her responses.
Disability Scoop Is On Twitter!Follow Disability Scoop on Twitter where you can sign up to receive news alerts on your mobile phone as text messages. Click here to check it out and don't forget to become a follower.
Become A Fan On FacebookClick here to check out the Disability Scoop page on Facebook and be sure to become a fan.
About Disability ScoopDisability Scoop is the first and only nationally focused online news organization serving the developmental disability community including autism, cerebral palsy, Down syndrome, fragile X and intellectual disability, among others. Launched in 2008, Disability Scoop is the premier source for developmental disability news. Learn more at http://www.disabilityscoop.com.
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