Fwd: Proper diagnosis, communication, anatomy, and a marathon hero

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Dear all, Below please

find: •

“Grey’s Anatomy” Character given Asperger Syndrome

(with thanks to Alison). •

“How Proper Diagnosis Is Elusive for Many Families” from

abcnews (and featuring some GRASP folk :-) •

“This Journey Began Before Starting Line” from the New

York Times.

Note: As many of you know, GRASP has enjoyed a contract with the

NYC Public Schools working with their autistic kids, providing staff

trainings, and parent trainings, since 2004. This is the story of one of

their kids running a marathon. •

“Tuning in to unconscious communication,” from the MIT

News Office (granted, this is a piece about work done at MIT as reported by

MIT . . . but its still interesting enough to pass on) Yours,

y’all, mjc --------------------------------------- Grey's Anatomy' Exclusive: McDonnell's

Secret Revealed! Oct 30, 2008, 02:55 PM | by

Ausiello Categories: Grey's

Anatomy If you suspected there was a twist surrounding

McDonnell's three-episode Grey's Anatomy arc,

congratulations, you were right. Turns out her character, a celebrated

cardiac surgeon brought in to boost Seattle Grace's national ranking

beginning Nov. 13, is living with Asperger's syndrome. "Shonda [Rhimes]

thought it would be interesting to have an incredibly skilled surgeon who,

socially, is initially misunderstood," explains executive producer Betsy

Beers of the autism-related disorder, which is characterized by eccentric

behavior and a general social awkwardness. (Think Deschanel's Brennan

on Bones.) Eccentric behavior and social awkwardness?

Sounds like she'll fit right in! Or will she? Only time

-- and my following exclusive Q & A with the fraktabulous McDonnell --

will tell. AUSIELLO: How does everyone react to your

character, Dr. Virginia Dixon?
MARY McDONNELL:

In her first surgery she works primarily with and Karev, who are

both sort of caught off guard by her difficulty in communication. They

don't really know until the end of the episode that she has Asperger's.

It's challenging for them. On the one hand, you're introducing a dramatic

and comedic dynamic that people have to react to. On the other hand, you're

bringing on a very dignified real human being with a disability that can be

very problematic for everyone. What's it like playing

her?
It's been a wonderful experience.

Grey's has to do with social nuance and behavior

between people, and this is a character who can't really relate to any of

that. She comes in and brings a little bit of a different behavior to

Seattle Grace. How different are we talking? She's still

going to hook up with one of her colleagues,

right?
[Laughs] So far, I

have to tell you, I don't see any romance. That just makes me giggle. But

she's just coming in for three episodes so far, so we'll see. That's the

furthest thing from her mind. Might your stay be extended beyond the

three episodes?
There's always a possibility. I

think with this character, there's a great collaboration to kind of

experiment with her and with her situation and see the kind of effect it

may have on the world of Grey's, because she's

very atypical. Did Shonda create the role with you in

mind?
I don't know if it was created with me in

mind, but I was told that Shonda had me on her mind as soon as she started

thinking about it. She's put a great deal of trust in me, and it's part of

why I wanted to do it. Because when someone hands you something this

compelling and complicated and gives you good writing and also says, "I'm

trusting you to find the nuance here," then you kind of go home and think,

I'm lucky to be alive. --------------------------------------- In Search of the Autism

Answer Autism in America:

How Proper Diagnosis Is Elusive for Many Families By LAUREN COX ABC News Medical Unit Nov. 3, 2008 Growing up in Yonkers N.Y., Ross was always

diagnosed with something. The diagnoses began with speech delay, followed by

attention deficit disorder. Next was "psychosis not otherwise

specified." Obsessive compulsive disorder also joined the

ranks. Finally, at age 25, Ross was diagnosed with

high-functioning Asperger's syndrome. It was a grim diagnosis at the time; doctors

originally predicted that he would never be able to finish a real high school

curriculum. Despite this,

however, he eventually graduated and attained a bachelor's

degree. Ross, now 29,

works as a cardiovascular technician. But in the years before his diagnosis, Lois Ross,

's mother, says his

condition confounded every medical expert they saw.

"We were told for a brief time he was

schizophrenic," she says. "You'd say, 'Do you hear voices?' and he'd say, 'Yes' ...

It took three or four years until he got that the question was, 'Is it in

your mind, or is it other

people on the street?'" Living in a time when attention deficit disorder

was in the popular media

and autism was rarely heard of, Lois became a dogged activist

in helping her son,

whatever he had. She even became a social worker to

help developmentally disabled

people. It was a few years ago, when Lois started working

with people on the autism

spectrum, that it hit her. "I started working with a 13-year-old boy who was

diagnosed with Asperger's

and I kept coming home and telling my husband, 'I'm

working with

!'" The similarities between her son's behavior and the

teenager's -- the social

naïveté and a lack of interpersonal skills, laughing at the

wrong time -- made her

seek an expert in New York City. Suddenly, after the diagnosis, 's echolalia,

his obsession with a single subject, his aversion to other people's

touch -- everything that didn't fit before fit with the autism diagnosis and

made sense. As devastating as an autism diagnosis can be, for

many families it is an important first step in dealing with a child's

condition. And often it comes as a complete surprise.

In Barbara Ahrens' case, she wasn't expecting to

come across a life-changing revelation when she took a trip with

her toddler to the local

children's entertainment franchise Discovery Zone. "There weren't any other children around for me to

compare him to," says Ahrens, a new mom whose only other relations to

children were nieces and nephews who were much older than her own

child. But when she watched 1-year-old play

side-by-side with other toddlers that day in 1998, Ahrens noticed a

difference. "His mannerisms ... it just wasn't the way the

other children acted," says Ahrens. didn't talk, smile, or laugh as much as

other children. Nor did he

seem to care whether anyone played with him. "I told myself: I can't compare him with other kids

because everybody's different, but it just didn't fit," she

says. That subtle difference only grew more apparent as

aged, leaving Ahrens at a loss for what to do, where to go, and

when to worry. It took four more years -- during a crucial developmental

time for a child with autism -- before Ahrens found expert help to

diagnose him. Real Warning Signs With autism's subtle early signs and no physical

test for autism, 's

kindergarten diagnosis is pretty close to the norm for

most families. Early signs of autism can be easily confused for a

shy personality, speech

difficulties, bad parenting or obsessive compulsive

tendencies. Childhood

development experts say the list of red herrings goes

on. Add on the number of problems that can mimic autism

symptoms -- Rhett Syndrome, fragile X, hearing difficulties or more

-- and the diagnosis quickly becomes very complicated for the average

family doctor. When children do see a specialist, the diagnosis

can take hours and the waiting lists can be months

long. Autism specialists need detailed family histories

and timelines of developmental milestones like walking or talking.

At the crux of the autism

diagnosis lies in interviews and playtime. When a young child comes to her office, Lynda

Geller, clinical director of the Asperger's Institute at the New York

University Child Study Center in New York, pays careful attention to the

way a child plays. If a toddler spins the wheel of the truck hundreds

of times, but never pretends the truck is driving, it can be a warning

sign. A failure to understand certain universal gestures is another

red flag -- for example, a

15-month-old who don't understand pointing. At that age,

it's natural to follow the

direction of the finger instead of staring at the hand. Geller says first-time parents like Ahrens can miss

these subtle differences. "Often it depends if it's their only child, because

they're not aware that

it's different," says Geller. "It's not something we

necessarily teach in high

school." Autism Speaks has developed a unique video

library (http://www.autismspeaks.org/video/glossary.php)

that helps demonstrate the

subtle differences between autistic and non-autistic

children's play. Geller

uses some of the same techniques in the videos, such

as blowing bubbles to

check for what's called joint attention, or the tendency to draw others into your experience with

looks and gestures. "I might blow bubbles with the child," says Geller.

"What I want to see if the

child is looking over at their mom and dad as a sharing of

their enjoyment."

Joint attention is crucial to learning language,

and a language deficit is

a signature of autism. Early signs like a lack of joint

attention differ from the

common delayed speech red herring many children

receive. In fact, when Ahrens first took to the

pediatrician, all she heard was that he might have a speech

delay. "Autism was never on my mind -- never thought of

it, people never said anything, nothing," says

Ahrens. Her pediatrician advised her to wait to see if

learned more than 10 words. He told her to come back when he was two,

then asked her back again

when he was two and a half. Waiting and Bottlenecks "The reason people should go to a specialist in

autism is because people who are familiar with autism can diagnosis it

early," says Geller. "A pediatrician might say, 'He'll outgrow it maybe in

six months.' Someone who's

an expert in autism would not say that -- and those six months

are critical." Before his third birthday, Ahrens got in to

the Early Childhood Intervention Services, a federally funded program

to help teach children who

have cognitive, motor or communication delays. Indeed, the Early Childhood Intervention (ECI)

teachers went straight to helping with his speech problems, but

autism experts warn that speech therapy isn't the same as an autism

diagnosis and autism treatment. "Early intervention is not a diagnostic system;

they will say this themselves," says Geller. "They want to just treat

what's the delay and see

if the child will respond." Although received some analysis, Ahrens

says he never fit into the

autism spectrum until he got into kindergarten. His younger

sister, or

"Lizzie" also wasn't diagnosed until kindergarten. "In the back of my mind, I knew there was more to

this [than a speech disorder]," says Ahrens. "I thought, 'Well, fine,

maybe once his speech picks up, maybe his everything else will pick

up.'" Unfortunately, autism experts

disagree. "If I just put them in speech therapy and get them

to say 'pah,' it's not

going to help them," says Dr. Max Wiznitzer, from the Rainbow

Babies and Children's

Hospital in Cleveland. "It's not pronunciation; their

problem is with the use of

language." A person with autism might have three words, or

have the vocabulary of a college professor, but still not understand how to

converse with someone instead of "talking at" someone, says

Wiznitzer. Autism experts like Geller and Wiznitzer aim to

treat communication first

and foremost in autistic children, because communication is key

to later

development. Geller says the earlier the treatment, the higher

the child may eventually

fall on the autism spectrum -- and the closer they will

come to enjoying a normal

life. This push on early intervention has created a

frantic rush from all sides: parents, schools, and

physicians. The Weight of a Label "We have to juggle and triage our wait list," says

Dr. , developmental pediatrician at the LADDERS program

at Massachusetts General

Hospital for Children in Boston. The LADDERS program diagnoses 700 to 800 children a

year, and for every three

kids diagnosed, one was found not to have autism. "Younger kids get in within a month or two," says

. However for those who are seeking a second opinion,

or who already have access

to treatment, they may wait up to six months. This situation stands as evidence that specialists

in autism have not met the

increasing demand. One problem is that there are simply

more diagnoses nowadays.

While for decades the U.S. Centers for Disease Control pinned the incidence of autism at four

children in 10,000, now the CDC reports a rate of 1 in 150. Whether that

increase came from an expansion in the criteria used to diagnose autism

or if it instead represents a true increase has yet to be

answered. But whatever the source of the increase, autism

experts also face pressure

from the school systems. "I've had parents come to us and say the schools

say, 'We can't do anything

for you unless you have the label,'" says Wiznitzer.

"Either the schools are

misinformed about the law, or they realize that it's

a money

maker." In Ohio, Wiznitzer says a child with autism

receives four times the amount of funding in school than a child without

disabilities, and the autism diagnosis trumps any other developmental

disorder. "As a consequence of that, we have to be really,

really careful," he says.

"There's too many people out here applying the label

with incomplete data or

incomplete knowledge." But, Wiznitzer adds for parents: "The real question

is what are you going to

do with the label? Where is it going to get it you?"

For a family like the Ahrenses, a diagnosis helped

her family get the treatment they needed in school. But even without

the early intervention, a

diagnosis can mean worlds to families and

individuals. "If you can get a label on something, then you can

put some closure on the

emotional involvement," says Wiznitzer. As for Ross, he now participates in an

Asperger's support group called GRASP. And Lois Ross says the fact that he

finally received an accurate diagnosis has made all the difference in

his life -- as well as her

own. "I think it would have made a big difference just

knowing," she says, "but I

did everything and anything I could to make sure had

every opportunity. "I really feel that it's up to the parents -- I

have to make his life a productive life, and that's the goal. That's the

way I look at it." Copyright © 2008 ABC News Internet

Ventures --------------------------------------- This

Journey Began Before Starting Line New York Times; 11.01.08 By Nadine

McNeil will reach the crest of the Verrazano-Narrows Bridge on her

handcycle soon after 7:30 Sunday morning. Moments later, she will roll

swiftly past her 18-year-old son, Tyler, who is autistic. This will be her

fourth marathon, and Tyler’s first. She has grown uneasy this week

thinking of the moment when she will leave him

behind. “I

can’t look back,” she said. “For 18 years, I’ve

always known every moment where Tyler is. On Sunday, I

won’t.” Though

joint parent-child appearances in the New

York City Marathon are not uncommon — Rod Dixon, the

race’s 1983 champion, is returning this year to run the race with his

daughter — the path that brought Nadine, 42, and Tyler to the

marathon is an unlikely one. Nadine had a stroke when she was 8 and lost

the use of her right arm and her right leg. Tyler, her only child, is

severely speech-delayed. Even now at 6 feet 4 inches, he communicates

verbally by using one or two words at a time. Nadine has poured her life into her son. Tyler, in

turn, is what she calls “my right arm.” He compensates for her

disabilities by tying her shoes. He does her buttons and zippers. If she

tries to put on her coat, he will immediately rush to her side and gently

lift her right arm into the sleeve. Neither would have ever made it to this

year’s starting line without the other. Their path to the marathon began when Tyler was 7.

Nadine arrived with her son at Hunter

College to see the director of Project Happy, a program that

provides athletic and recreational activities to New York City youth with

disabilities. Nadine was by then a single mother living in the Bronx. She

had already been turned away from athletic programs at the Bronx Y, the 92nd

Street Y and the 53rd Street Y because of Tyler’s tantrums

and other behavior. “He came in with his mother,” said

Penny Shaw, the 71-year-old director of Project Happy. “He had no

language. He did nothing but scream. We had never seen a child like that,

and we certainly had never taken one into the program. But the mother was

so nice, I said we would try.” Soon after Tyler enrolled, Shaw and her staff

recognized that he was a natural athlete. When he picked up a basketball,

he would throw it in the hoop with almost mathematical precision. Nadine

had also started taking Tyler to Achilles Kids, a running and rolling

program for children with disabilities. To get him to events, she had to

leave the Bronx for Manhattan at 5:30 a.m. Tyler’s behavior began to improve during his

involvement in Achilles Kids and Project Happy. He has since won dozens of

medals in the Special Olympics, particularly in swimming. “This child

was saved by sports,” Shaw said. Nadine had never considered that athletics could

serve a similar role in her own life. At Achilles Kids, she would guard the

bags and the coats while Tyler ran. One day in August 2006, Dick Traum, an

amputee who founded the Achilles adult program, mentioned to Nadine that

she should consider racing in a marathon. “I laughed,” Nadine said. “He

said I could do it in a handcycle. I was like, ‘Dick, my right

arm?’ ” Three months later, in November 2006, Nadine found

herself at the starting line in Staten Island. She had attached her

paralyzed right arm to the handcycle’s pedal mechanism with duct tape

from Home Depot. She powered the chair with her left arm and finished the

marathon in 4 hours 3 minutes. As Nadine trained for more races, Tyler would jog

by her wheelchair. Nadine began to notice a difference in her supposedly

frozen arm: It had gained some power and even some range of motion. Her

doctor noticed, too. “It has become much stronger in just the past

year with all the practice she’s had,” said Regina Coyne,

Nadine’s general practitioner. Last November, Tyler became confused when Nadine

boarded the bus to travel to the marathon starting line. He wanted to go

with her. His mother convinced him to let her go by saying that he was not

allowed to run the race until he was 18. After Tyler turned 18 in July, Nadine took him to

his doctor, who performed an EKG and said Tyler was physically

capable. Tyler’s

school for special-needs students in the Bronx, P.S. 176, held a pep rally

for him Wednesday. He marched around the seating bowl of the auditorium

while holding an American flag, and his fellow students — some of

them holding purple, green or orange pompoms — sang karaoke versions

of “My Country ’Tis of Thee,” “We Will Rock

You” and “We Are the Champions.” One of Tyler’s friends, , 19, who is also

autistic, took the microphone and said solemnly: “Tyler, I have two

words to say to you: Good luck at the marathon, and I love

you.” Tyler will run

the race with one of his special-education teachers, Vinny Bruno. His

mother has decided not to try to slow her chair and ride beside him. After

18 years, she wants to allow him to become more independent — a shift

that is as difficult for her as for him. She thinks back to when he was 3 and the doctors

suggested that he would never even be toilet trained, let alone be an

athlete. She has had trouble sleeping this week, mostly because she knows

him so well. “He’s going to try his hardest to get

to that finish line, whether it hurts, whether it drives him nuts,”

she said. “He’s going to keep coming until he sees

me.” ---------------------------------------

Tuning in to unconscious

communication MIT

researchers discover revealing clues in conversations

Chandler, MIT News

Office October 21,

2008 What you say in a conversation -- whether it's on a

first date, a job interview or pitching an idea -- may be less

important than how you say it. But the cues that may decide the outcome can be

so subtle that neither

person in the conversation is consciously aware of

them. Whether or not you get the job, or the other

person's phone number, is very strongly influenced by unconscious factors

such as the way one person's speech patterns match the other's, the

level of physical activity

as people talk, and the degree to which one person sets

the tone -- literally --

of the conversation. These subtle cues provide "honest signals" about what's really going on and

strongly predict the outcome, according to research by the MIT Media

Lab's (Sandy) Pentland and his colleagues.

"Honest Signals" is also the title of Pentland's

new book about the research, being published this month by MIT Press.

The research was based on

tens of thousands of hours of data from devices about the

size of a credit card that

record movements and voices, which Pentland has dubbed "sociometers." Using just this data, with no

knowledge of what was

said, Pentland could predict the outcome -- whether a job offer,

a second date, or

investment in a business plan -- more accurately than

by using any other single

factor. Pentland says that this technology is recording and

quantifying something that

most people already understand intuitively. "All of

this is sort of folk

knowledge," he says, "we all know it's there, but we

all ignore it."

Pentland, with both a degree in psychology and

experience in signal processing, zeroed in on "a few things that seem to

come up again and again"

in deciding what aspects of human communication to monitor

with the new

devices. The features he found that are highly predictive of

outcomes, he says, "match

the literature in biology about signaling in animals." In

fact, Pentland suggests,

the non-linguistic channels of communication that are

measured by the sociometers may have started

among our ancestors long before the evolution of language itself, forming a

deeper, more primal way of

understanding intentions, coordinating activities and

establishing power relationships within the

group. "Half of our decision-making seems to be predicted

by this unconscious channel," says Pentland, the Toshiba Professor of

Media Arts and Sciences.

"That's exactly the channel that you see in apes" as

they coordinate their

activities without the use of language. Pentland's research so far on these non-linguistic

signaling channels has

been based on getting groups of people, such as attendees at

a conference or employees

of a company, to wear the sociometers over periods ranging from a day to a month or more. The

devices, which include a

microphone for recording voices and accelerometers to

measure a person's

movements, are a bit smaller than the name badges

typically worn at

conferences. In future research, he says, the same

functions could be

monitored using specially programmed cellphones. The data gathered from the devices can be used not

only to predict the outcomes of specific interactions between people,

but even the relative productivity of different teams within a company.

"This information is not

in the organizational charts," Pentland says. "This human side

is missing from all

traditional measures" of how groups of people work together. The strong correlations between unconscious forms

of communication and the

decisions that result strongly undermines people's perception

that they are making

choices based on rational, conscious factors,

Pentland says. "My data

shows that's simply not true." By understanding and

measuring factors that people are usually

unaware of, he says, "I view it as putting human nature back into our social

fabric." It may even help to predict the outcome of

elections, he says. For example, by watching for the movements that signal

the factor Pentland calls

"influence" -- the setting by one person of the tone and pace of

a conversation -- in a

presidential debate, it is possible to see which person is dominant, regardless of what is being

said. "The person who sets

the tone," he says, "is the one who wins, in every election

since 1960." URL: http://web.mit.edu/newsoffice/2008/signals-1021.html

GRASP

The Global and Regional Asperger Syndrome Partnership, Inc.

666 Broadway, Suite 830

New York, NY 10012

p + f = 1.

www.grasp.org

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