Fwd: NYTimes.com Article: For Siblings of the Autistic, a Burdened Youth

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SIDEWAYS - WINNER! BEST PICTURE

WINNER for BEST PICTURE at the IFP/GOTHAM AWARDS and one of

the Top 10 BEST PICTURES of the Year from the National Board of Review,

SIDEWAYS is the new comedy from Payne, director of

ELECTION and ABOUT SCHMIDT and starring Giamatti,

Haden Church, Oh and Virginia Madsen.

Watch the trailer at: http://www.foxsearchlight.com/sideways

\----------------------------------------------------------/

For Siblings of the Autistic, a Burdened Youth

December 10, 2004

By JANE GROSS

ORADELL, N.J. - When Mark Plage, 15, forgets to padlock the

door of his bedroom, his 13-year-old autistic brother,

, barges in and leaves the place a shambles. When Mark

tries to toss a football with , the boy turns his back

and walks away.

Mark's mother, by her own admission, used to scream at him

for the smallest thing, unable to contain her frustration

with . Mark often wished she would come to his ice

hockey games with his father. But Debi Plage had to stay

home with her disabled son.

Mark recounts these experiences without reproach and with

insight well beyond his years. When " messes something

up, " Mark said, " I just fix it. " As for his brother's

inability to play, he said, " I know that it's not that he

won't do it, but that he can't. "

His mother's rages were " harder to deal with, " Mark said,

but " after a while I realized she wasn't really yelling at

me. "

He can even brush aside her occasional threats to leave

home and never come back. " I knew in the back of my mind

she'd never do it, " Mark said. " She was just saying stuff

because she was really upset. "

Siblings of children with any disability carry the burden

of extra responsibility and worry for the future, though

they are also enriched by early lessons in compassion and

familial love. But autism, a brain disorder that affects

communication and social interaction, is in a class by

itself in the heavy toll it takes on siblings, according to

educators, therapists and a dozen scientific studies.

With rare exceptions, no disability claims more parental

time and energy than autism because teaching an autistic

child even simple tasks is labor intensive, and managing

challenging behavior requires vigilance. Also, autistic

children can be indifferent to loving overtures, which is

painful to siblings, some of whom must literally show a

brother or sister how to hug. Finally, some autistic

children have raging tantrums, destroy the belongings of

others and behave in peculiar ways, which can be

frightening or embarrassing to siblings and create an

environment of unpredictability similar to that in families

with an alcoholic member.

" There's bound to be resentment when the emotional and

financial resources are all wrapped up in one kid, " said

Don Meyer, director of the Sibling Support Project, run by

ARC, formerly the Association for Retarded Citizens. " It's

ny this, ny that, the United States of ny.

ny is the sun in the family's solar system. "

Much has changed since Mr. Meyer's first support group, in

1990, when most of the children in it had siblings with

Down syndrome or cerebral palsy. Now, the siblings of

autistic children dominate ARC's 160 sibling support groups

nationwide. And groups just for siblings of autistic

children are spreading.

The focus has changed partly because of the spike in

diagnoses of autism, experts say. But it is also because of

the recent acknowledgment of the impact on other children

in the household, said Dr. L. , founder of the

s Developmental Disabilities Center at Rutgers

University, one of the nation's first schools for autistic

children and a leader in research and programming for

siblings.

Among Dr. 's innovations is formal training for

siblings so they can engage an autistic brother or sister

in play, using techniques widely considered the most

effective in the classroom. Dr. encourages parents

to discipline autistic children, say, with a timeout, to

make a statement about fairness to other children. She also

urges families not to take togetherness to extremes. A

normal child's school play or birthday celebration, for

instance, need not be upstaged by the outburst of an

autistic sibling, who might better be left at home.

Dr. has made the sibling groups a regular part of

her school's curriculum. These groups generally include

recreational and therapeutic activities, including art

therapy, conversation guided by facilitators, the

enticement of pizza or other children-friendly snacks and

no parents listening.

The toll on the siblings of autistic children was painfully

obvious at several recent support groups, at Jewish

community centers in Scarsdale, N.Y., and on the Upper West

Side of Manhattan. This reporter was allowed to observe two

dozen children from the ages of 5 to 11, on the conditions

that only first names be used for the participating

children and that autistic siblings not be identified.

Alice, who is 11 and has a 6-year-old autistic brother,

complained that " when you have a problem you don't get the

attention you want. " When her mother goes out to walk the

dog, leaving Alice in charge, the girl said she was

frightened that her brother would bolt from the house and

" get lost, run over or die in the road. "

, 5, said that her 7-year-old sister could not talk

and " so all she says is 'ugh, ugh, ugh.' " The group leader

asked how that makes her feel. " Sad, " whispered.

Speech, occupational and behavioral therapists frequent the

house, all focused on her sister.

" A lot of people have to work with her, " said. " But

one person left, so now there are less people, and I like

that better. "

Deborah, 9, grumbled about being tired all the time,

because her 7-year-old autistic sister was often awake and

noisy through the night. Deborah also said she wished she

could argue with her sibling. " I'm the only one in the

whole fourth grade who isn't allowed to have a fight, " she

said.

Jonah, 7, and Max, 10, commiserated that their autistic

brothers, 10 and 8, sometimes waited too long to go to the

bathroom and had accidents. , 8, described his brother

going from cabana to cabana on a family vacation and eating

other people's fruit. All three boys said they missed being

able to talk about sports with their brothers.

Maggie, 10, complained about how uncompromising her younger

brother could be. " It takes too much time " to draw him a

picture, she said, " because it has to be perfect. " And on

the trampoline, he will play only one game, the Cow Jumped

Over the Moon. " He lies down and makes me jump over him,

over and over and over and over, " she said.

Dr. 's research shows that children can engage

autistic siblings in simple games, which improves the

normal youngster's quality of life, even if the autistic

sibling is largely indifferent. This technique is regularly

used at the Alpine Learning Group in Paramus, N.J., where

Parles, 11, taught his 14-year-old brother, ,

to play Nok Hockey and shoot baskets.

told his parents, and Craig Parles, that he

wanted to play Uno, a card game that relies on matching

colors and numbers, with , who is also mentally

retarded, a common combination. So the boys' parents asked

for help from 's teachers, who guided through

the first lesson one day recently.

, who barely speaks, was not at his best that day.

But was determined and well versed in the basic

techniques of behavior management. When 's attention

wandered, tapped his shoulder. With simple one-step

instructions, the younger boy explained how to match cards.

Twice, eyes darting around the room, mistakenly

paired a yellow 7 and a green 5. Each time

re-established eye contact and gently corrected him. On the

third try, got it. rewarded him with a

whooping high five. " He'll do better the next time, "

said later.

The goal of teaching to play Uno was 's

pleasure. But that does not mean the younger boy is free of

responsibilities unusual for his age. When the two brothers

visit their grandparents, for example, is a

translator. He is the one who can tell whether is

trying to say " juice " or " cheese " and also can distinguish

a " fake " cry, which is best ignored, from a real one that

requires adult attention.

Dr. Bridget A. , one of the founders of Alpine,

's school, said that younger siblings like

" don't know anything different " and thus slide naturally

into an adult role. They are also so attuned to their

parents' stress and heartache, Dr. said, that they

hide their own feelings and " walk around like everything is

fine and dandy. "

Even in support groups, children resist talking about life

with an autistic sibling. Jen , a group leader on the

Upper West Side, said that when asked what was different

about their own lives, they commonly answered " nothing " or

" it's exactly the same. " Ms. , who also works as a

private behavioral therapist, said some families were

uneasy when their children complained about their autistic

siblings.

One father, for instance, listened as his 10-year-old

daughter begged for another sibling, without autism, so she

could " see what it's like to have a normal life. " The

father, who said his daughter had ample opportunity to

" process these feelings " in therapy and a support group,

said he believed that many of her complaints were about the

" routine struggles of being a sibling " and an " obsession

with wanting attention. "

Even when parents give them explicit permission to vent

about an autistic sibling, many children choose silence,

experts say, one of many ways they may try to protect their

overburdened parents. An example is Amy Chiappiniello, 14,

who has a 13-year-old brother, , with severe autism.

Amy's mother, Lori Chiappiniello, talks freely of the

chaotic years when destroyed furniture, left tooth

marks on the mantel and broke windows. She encourages Amy

to discuss that terrible time, but the girl says she does

not remember.

Mrs. Chiappiniello sent Amy to karate lessons so she could

protect herself if tried to bite her or pull her

hair, and to a therapist to discuss her unusual childhood.

She encouraged Amy to seek peace and quiet, alone or with

her friends, by staying with members of the extended

family, who all live on the same street in Stratford, Conn.

She even tells Amy that she " hates that has autism "

so her daughter knows she is not the only one who feels

that way.

Still, Amy resists her mother's efforts to draw her out.

" Is it hard sometimes? " Mrs. Chiappiniello asked.

Amy replied dully, " Is what hard? " She became animated only

when the conversation turned to people who tease or stare

at her brother. " I give them an extra dirty look with a

swear or two, " Amy said.

Later, in an e-mail message, Amy was freer with her

feelings. Therapy was a waste, she wrote, " because I

realized they couldn't do anything so I just shut down. "

" I keep it all to myself, " Amy added. " But when I can't

keep it in any more, I just sit in my room and cry for

hours. If my parents catch me crying, I just say hormones

kicked in and sometimes that's true. "

Mark Plage, by his own account, feels less distress.

can certainly be annoying, but Mark is used to it and sees

the silver lining. " He brings us together more, because

we're in it as a family, " Mark said.

Still, he is hyper-vigilant, more an auxiliary parent than

a brother to no matter how many times his parents

tell him that it is not his job. One blustery evening, for

instance, his mother was enjoying a cup of tea when,

upstairs, 's steady gait turned to jump-up-and-down

pounding and his high-pitched singsong to a shriek. That

usually means his brother is happy, Mark said, but you can

never be too careful.

" I'm going up to check on him, " he said.

http://www.nytimes.com/2004/12/10/health/10siblings.html?ex=1103780009 & ei=1 & en=7\

3eb3f493be44ed2

---------------------------------

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Copyright 2004 The New York Times Company

[Guest guest]

The article below from NYTimes.com

has been sent to you by shw712@....

Thought you might find this interesting.

might also.

shw712@...

/--------- E-mail Sponsored by Fox Searchlight ------------\

SIDEWAYS - WINNER! BEST PICTURE

WINNER for BEST PICTURE at the IFP/GOTHAM AWARDS and one of

the Top 10 BEST PICTURES of the Year from the National Board of Review,

SIDEWAYS is the new comedy from Payne, director of

ELECTION and ABOUT SCHMIDT and starring Giamatti,

Haden Church, Oh and Virginia Madsen.

Watch the trailer at: http://www.foxsearchlight.com/sideways

\----------------------------------------------------------/

For Siblings of the Autistic, a Burdened Youth

December 10, 2004

By JANE GROSS

ORADELL, N.J. - When Mark Plage, 15, forgets to padlock the

door of his bedroom, his 13-year-old autistic brother,

, barges in and leaves the place a shambles. When Mark

tries to toss a football with , the boy turns his back

and walks away.

Mark's mother, by her own admission, used to scream at him

for the smallest thing, unable to contain her frustration

with . Mark often wished she would come to his ice

hockey games with his father. But Debi Plage had to stay

home with her disabled son.

Mark recounts these experiences without reproach and with

insight well beyond his years. When " messes something

up, " Mark said, " I just fix it. " As for his brother's

inability to play, he said, " I know that it's not that he

won't do it, but that he can't. "

His mother's rages were " harder to deal with, " Mark said,

but " after a while I realized she wasn't really yelling at

me. "

He can even brush aside her occasional threats to leave

home and never come back. " I knew in the back of my mind

she'd never do it, " Mark said. " She was just saying stuff

because she was really upset. "

Siblings of children with any disability carry the burden

of extra responsibility and worry for the future, though

they are also enriched by early lessons in compassion and

familial love. But autism, a brain disorder that affects

communication and social interaction, is in a class by

itself in the heavy toll it takes on siblings, according to

educators, therapists and a dozen scientific studies.

With rare exceptions, no disability claims more parental

time and energy than autism because teaching an autistic

child even simple tasks is labor intensive, and managing

challenging behavior requires vigilance. Also, autistic

children can be indifferent to loving overtures, which is

painful to siblings, some of whom must literally show a

brother or sister how to hug. Finally, some autistic

children have raging tantrums, destroy the belongings of

others and behave in peculiar ways, which can be

frightening or embarrassing to siblings and create an

environment of unpredictability similar to that in families

with an alcoholic member.

" There's bound to be resentment when the emotional and

financial resources are all wrapped up in one kid, " said

Don Meyer, director of the Sibling Support Project, run by

ARC, formerly the Association for Retarded Citizens. " It's

ny this, ny that, the United States of ny.

ny is the sun in the family's solar system. "

Much has changed since Mr. Meyer's first support group, in

1990, when most of the children in it had siblings with

Down syndrome or cerebral palsy. Now, the siblings of

autistic children dominate ARC's 160 sibling support groups

nationwide. And groups just for siblings of autistic

children are spreading.

The focus has changed partly because of the spike in

diagnoses of autism, experts say. But it is also because of

the recent acknowledgment of the impact on other children

in the household, said Dr. L. , founder of the

s Developmental Disabilities Center at Rutgers

University, one of the nation's first schools for autistic

children and a leader in research and programming for

siblings.

Among Dr. 's innovations is formal training for

siblings so they can engage an autistic brother or sister

in play, using techniques widely considered the most

effective in the classroom. Dr. encourages parents

to discipline autistic children, say, with a timeout, to

make a statement about fairness to other children. She also

urges families not to take togetherness to extremes. A

normal child's school play or birthday celebration, for

instance, need not be upstaged by the outburst of an

autistic sibling, who might better be left at home.

Dr. has made the sibling groups a regular part of

her school's curriculum. These groups generally include

recreational and therapeutic activities, including art

therapy, conversation guided by facilitators, the

enticement of pizza or other children-friendly snacks and

no parents listening.

The toll on the siblings of autistic children was painfully

obvious at several recent support groups, at Jewish

community centers in Scarsdale, N.Y., and on the Upper West

Side of Manhattan. This reporter was allowed to observe two

dozen children from the ages of 5 to 11, on the conditions

that only first names be used for the participating

children and that autistic siblings not be identified.

Alice, who is 11 and has a 6-year-old autistic brother,

complained that " when you have a problem you don't get the

attention you want. " When her mother goes out to walk the

dog, leaving Alice in charge, the girl said she was

frightened that her brother would bolt from the house and

" get lost, run over or die in the road. "

, 5, said that her 7-year-old sister could not talk

and " so all she says is 'ugh, ugh, ugh.' " The group leader

asked how that makes her feel. " Sad, " whispered.

Speech, occupational and behavioral therapists frequent the

house, all focused on her sister.

" A lot of people have to work with her, " said. " But

one person left, so now there are less people, and I like

that better. "

Deborah, 9, grumbled about being tired all the time,

because her 7-year-old autistic sister was often awake and

noisy through the night. Deborah also said she wished she

could argue with her sibling. " I'm the only one in the

whole fourth grade who isn't allowed to have a fight, " she

said.

Jonah, 7, and Max, 10, commiserated that their autistic

brothers, 10 and 8, sometimes waited too long to go to the

bathroom and had accidents. , 8, described his brother

going from cabana to cabana on a family vacation and eating

other people's fruit. All three boys said they missed being

able to talk about sports with their brothers.

Maggie, 10, complained about how uncompromising her younger

brother could be. " It takes too much time " to draw him a

picture, she said, " because it has to be perfect. " And on

the trampoline, he will play only one game, the Cow Jumped

Over the Moon. " He lies down and makes me jump over him,

over and over and over and over, " she said.

Dr. 's research shows that children can engage

autistic siblings in simple games, which improves the

normal youngster's quality of life, even if the autistic

sibling is largely indifferent. This technique is regularly

used at the Alpine Learning Group in Paramus, N.J., where

Parles, 11, taught his 14-year-old brother, ,

to play Nok Hockey and shoot baskets.

told his parents, and Craig Parles, that he

wanted to play Uno, a card game that relies on matching

colors and numbers, with , who is also mentally

retarded, a common combination. So the boys' parents asked

for help from 's teachers, who guided through

the first lesson one day recently.

, who barely speaks, was not at his best that day.

But was determined and well versed in the basic

techniques of behavior management. When 's attention

wandered, tapped his shoulder. With simple one-step

instructions, the younger boy explained how to match cards.

Twice, eyes darting around the room, mistakenly

paired a yellow 7 and a green 5. Each time

re-established eye contact and gently corrected him. On the

third try, got it. rewarded him with a

whooping high five. " He'll do better the next time, "

said later.

The goal of teaching to play Uno was 's

pleasure. But that does not mean the younger boy is free of

responsibilities unusual for his age. When the two brothers

visit their grandparents, for example, is a

translator. He is the one who can tell whether is

trying to say " juice " or " cheese " and also can distinguish

a " fake " cry, which is best ignored, from a real one that

requires adult attention.

Dr. Bridget A. , one of the founders of Alpine,

's school, said that younger siblings like

" don't know anything different " and thus slide naturally

into an adult role. They are also so attuned to their

parents' stress and heartache, Dr. said, that they

hide their own feelings and " walk around like everything is

fine and dandy. "

Even in support groups, children resist talking about life

with an autistic sibling. Jen , a group leader on the

Upper West Side, said that when asked what was different

about their own lives, they commonly answered " nothing " or

" it's exactly the same. " Ms. , who also works as a

private behavioral therapist, said some families were

uneasy when their children complained about their autistic

siblings.

One father, for instance, listened as his 10-year-old

daughter begged for another sibling, without autism, so she

could " see what it's like to have a normal life. " The

father, who said his daughter had ample opportunity to

" process these feelings " in therapy and a support group,

said he believed that many of her complaints were about the

" routine struggles of being a sibling " and an " obsession

with wanting attention. "

Even when parents give them explicit permission to vent

about an autistic sibling, many children choose silence,

experts say, one of many ways they may try to protect their

overburdened parents. An example is Amy Chiappiniello, 14,

who has a 13-year-old brother, , with severe autism.

Amy's mother, Lori Chiappiniello, talks freely of the

chaotic years when destroyed furniture, left tooth

marks on the mantel and broke windows. She encourages Amy

to discuss that terrible time, but the girl says she does

not remember.

Mrs. Chiappiniello sent Amy to karate lessons so she could

protect herself if tried to bite her or pull her

hair, and to a therapist to discuss her unusual childhood.

She encouraged Amy to seek peace and quiet, alone or with

her friends, by staying with members of the extended

family, who all live on the same street in Stratford, Conn.

She even tells Amy that she " hates that has autism "

so her daughter knows she is not the only one who feels

that way.

Still, Amy resists her mother's efforts to draw her out.

" Is it hard sometimes? " Mrs. Chiappiniello asked.

Amy replied dully, " Is what hard? " She became animated only

when the conversation turned to people who tease or stare

at her brother. " I give them an extra dirty look with a

swear or two, " Amy said.

Later, in an e-mail message, Amy was freer with her

feelings. Therapy was a waste, she wrote, " because I

realized they couldn't do anything so I just shut down. "

" I keep it all to myself, " Amy added. " But when I can't

keep it in any more, I just sit in my room and cry for

hours. If my parents catch me crying, I just say hormones

kicked in and sometimes that's true. "

Mark Plage, by his own account, feels less distress.

can certainly be annoying, but Mark is used to it and sees

the silver lining. " He brings us together more, because

we're in it as a family, " Mark said.

Still, he is hyper-vigilant, more an auxiliary parent than

a brother to no matter how many times his parents

tell him that it is not his job. One blustery evening, for

instance, his mother was enjoying a cup of tea when,

upstairs, 's steady gait turned to jump-up-and-down

pounding and his high-pitched singsong to a shriek. That

usually means his brother is happy, Mark said, but you can

never be too careful.

" I'm going up to check on him, " he said.

http://www.nytimes.com/2004/12/10/health/10siblings.html?ex=1103780009 & ei=1 & en=7\

3eb3f493be44ed2

---------------------------------

Get Home Delivery of The New York Times Newspaper. Imagine

reading The New York Times any time & anywhere you like!

Leisurely catch up on events & expand your horizons. Enjoy

now for 50% off Home Delivery! Click here:

http://homedelivery.nytimes.com/HDS/SubscriptionT1.do?mode=SubscriptionT1 & Extern\

alMediaCode=W24AF

HOW TO ADVERTISE

---------------------------------

For information on advertising in e-mail newsletters

or other creative advertising opportunities with The

New York Times on the Web, please contact

onlinesales@... or visit our online media

kit at http://www.nytimes.com/adinfo

For general information about NYTimes.com, write to

help@....

Copyright 2004 The New York Times Company

[Guest guest]

The article below from NYTimes.com

has been sent to you by shw712@....

Thought you might find this interesting.

might also.

shw712@...

/--------- E-mail Sponsored by Fox Searchlight ------------\

SIDEWAYS - WINNER! BEST PICTURE

WINNER for BEST PICTURE at the IFP/GOTHAM AWARDS and one of

the Top 10 BEST PICTURES of the Year from the National Board of Review,

SIDEWAYS is the new comedy from Payne, director of

ELECTION and ABOUT SCHMIDT and starring Giamatti,

Haden Church, Oh and Virginia Madsen.

Watch the trailer at: http://www.foxsearchlight.com/sideways

\----------------------------------------------------------/

For Siblings of the Autistic, a Burdened Youth

December 10, 2004

By JANE GROSS

ORADELL, N.J. - When Mark Plage, 15, forgets to padlock the

door of his bedroom, his 13-year-old autistic brother,

, barges in and leaves the place a shambles. When Mark

tries to toss a football with , the boy turns his back

and walks away.

Mark's mother, by her own admission, used to scream at him

for the smallest thing, unable to contain her frustration

with . Mark often wished she would come to his ice

hockey games with his father. But Debi Plage had to stay

home with her disabled son.

Mark recounts these experiences without reproach and with

insight well beyond his years. When " messes something

up, " Mark said, " I just fix it. " As for his brother's

inability to play, he said, " I know that it's not that he

won't do it, but that he can't. "

His mother's rages were " harder to deal with, " Mark said,

but " after a while I realized she wasn't really yelling at

me. "

He can even brush aside her occasional threats to leave

home and never come back. " I knew in the back of my mind

she'd never do it, " Mark said. " She was just saying stuff

because she was really upset. "

Siblings of children with any disability carry the burden

of extra responsibility and worry for the future, though

they are also enriched by early lessons in compassion and

familial love. But autism, a brain disorder that affects

communication and social interaction, is in a class by

itself in the heavy toll it takes on siblings, according to

educators, therapists and a dozen scientific studies.

With rare exceptions, no disability claims more parental

time and energy than autism because teaching an autistic

child even simple tasks is labor intensive, and managing

challenging behavior requires vigilance. Also, autistic

children can be indifferent to loving overtures, which is

painful to siblings, some of whom must literally show a

brother or sister how to hug. Finally, some autistic

children have raging tantrums, destroy the belongings of

others and behave in peculiar ways, which can be

frightening or embarrassing to siblings and create an

environment of unpredictability similar to that in families

with an alcoholic member.

" There's bound to be resentment when the emotional and

financial resources are all wrapped up in one kid, " said

Don Meyer, director of the Sibling Support Project, run by

ARC, formerly the Association for Retarded Citizens. " It's

ny this, ny that, the United States of ny.

ny is the sun in the family's solar system. "

Much has changed since Mr. Meyer's first support group, in

1990, when most of the children in it had siblings with

Down syndrome or cerebral palsy. Now, the siblings of

autistic children dominate ARC's 160 sibling support groups

nationwide. And groups just for siblings of autistic

children are spreading.

The focus has changed partly because of the spike in

diagnoses of autism, experts say. But it is also because of

the recent acknowledgment of the impact on other children

in the household, said Dr. L. , founder of the

s Developmental Disabilities Center at Rutgers

University, one of the nation's first schools for autistic

children and a leader in research and programming for

siblings.

Among Dr. 's innovations is formal training for

siblings so they can engage an autistic brother or sister

in play, using techniques widely considered the most

effective in the classroom. Dr. encourages parents

to discipline autistic children, say, with a timeout, to

make a statement about fairness to other children. She also

urges families not to take togetherness to extremes. A

normal child's school play or birthday celebration, for

instance, need not be upstaged by the outburst of an

autistic sibling, who might better be left at home.

Dr. has made the sibling groups a regular part of

her school's curriculum. These groups generally include

recreational and therapeutic activities, including art

therapy, conversation guided by facilitators, the

enticement of pizza or other children-friendly snacks and

no parents listening.

The toll on the siblings of autistic children was painfully

obvious at several recent support groups, at Jewish

community centers in Scarsdale, N.Y., and on the Upper West

Side of Manhattan. This reporter was allowed to observe two

dozen children from the ages of 5 to 11, on the conditions

that only first names be used for the participating

children and that autistic siblings not be identified.

Alice, who is 11 and has a 6-year-old autistic brother,

complained that " when you have a problem you don't get the

attention you want. " When her mother goes out to walk the

dog, leaving Alice in charge, the girl said she was

frightened that her brother would bolt from the house and

" get lost, run over or die in the road. "

, 5, said that her 7-year-old sister could not talk

and " so all she says is 'ugh, ugh, ugh.' " The group leader

asked how that makes her feel. " Sad, " whispered.

Speech, occupational and behavioral therapists frequent the

house, all focused on her sister.

" A lot of people have to work with her, " said. " But

one person left, so now there are less people, and I like

that better. "

Deborah, 9, grumbled about being tired all the time,

because her 7-year-old autistic sister was often awake and

noisy through the night. Deborah also said she wished she

could argue with her sibling. " I'm the only one in the

whole fourth grade who isn't allowed to have a fight, " she

said.

Jonah, 7, and Max, 10, commiserated that their autistic

brothers, 10 and 8, sometimes waited too long to go to the

bathroom and had accidents. , 8, described his brother

going from cabana to cabana on a family vacation and eating

other people's fruit. All three boys said they missed being

able to talk about sports with their brothers.

Maggie, 10, complained about how uncompromising her younger

brother could be. " It takes too much time " to draw him a

picture, she said, " because it has to be perfect. " And on

the trampoline, he will play only one game, the Cow Jumped

Over the Moon. " He lies down and makes me jump over him,

over and over and over and over, " she said.

Dr. 's research shows that children can engage

autistic siblings in simple games, which improves the

normal youngster's quality of life, even if the autistic

sibling is largely indifferent. This technique is regularly

used at the Alpine Learning Group in Paramus, N.J., where

Parles, 11, taught his 14-year-old brother, ,

to play Nok Hockey and shoot baskets.

told his parents, and Craig Parles, that he

wanted to play Uno, a card game that relies on matching

colors and numbers, with , who is also mentally

retarded, a common combination. So the boys' parents asked

for help from 's teachers, who guided through

the first lesson one day recently.

, who barely speaks, was not at his best that day.

But was determined and well versed in the basic

techniques of behavior management. When 's attention

wandered, tapped his shoulder. With simple one-step

instructions, the younger boy explained how to match cards.

Twice, eyes darting around the room, mistakenly

paired a yellow 7 and a green 5. Each time

re-established eye contact and gently corrected him. On the

third try, got it. rewarded him with a

whooping high five. " He'll do better the next time, "

said later.

The goal of teaching to play Uno was 's

pleasure. But that does not mean the younger boy is free of

responsibilities unusual for his age. When the two brothers

visit their grandparents, for example, is a

translator. He is the one who can tell whether is

trying to say " juice " or " cheese " and also can distinguish

a " fake " cry, which is best ignored, from a real one that

requires adult attention.

Dr. Bridget A. , one of the founders of Alpine,

's school, said that younger siblings like

" don't know anything different " and thus slide naturally

into an adult role. They are also so attuned to their

parents' stress and heartache, Dr. said, that they

hide their own feelings and " walk around like everything is

fine and dandy. "

Even in support groups, children resist talking about life

with an autistic sibling. Jen , a group leader on the

Upper West Side, said that when asked what was different

about their own lives, they commonly answered " nothing " or

" it's exactly the same. " Ms. , who also works as a

private behavioral therapist, said some families were

uneasy when their children complained about their autistic

siblings.

One father, for instance, listened as his 10-year-old

daughter begged for another sibling, without autism, so she

could " see what it's like to have a normal life. " The

father, who said his daughter had ample opportunity to

" process these feelings " in therapy and a support group,

said he believed that many of her complaints were about the

" routine struggles of being a sibling " and an " obsession

with wanting attention. "

Even when parents give them explicit permission to vent

about an autistic sibling, many children choose silence,

experts say, one of many ways they may try to protect their

overburdened parents. An example is Amy Chiappiniello, 14,

who has a 13-year-old brother, , with severe autism.

Amy's mother, Lori Chiappiniello, talks freely of the

chaotic years when destroyed furniture, left tooth

marks on the mantel and broke windows. She encourages Amy

to discuss that terrible time, but the girl says she does

not remember.

Mrs. Chiappiniello sent Amy to karate lessons so she could

protect herself if tried to bite her or pull her

hair, and to a therapist to discuss her unusual childhood.

She encouraged Amy to seek peace and quiet, alone or with

her friends, by staying with members of the extended

family, who all live on the same street in Stratford, Conn.

She even tells Amy that she " hates that has autism "

so her daughter knows she is not the only one who feels

that way.

Still, Amy resists her mother's efforts to draw her out.

" Is it hard sometimes? " Mrs. Chiappiniello asked.

Amy replied dully, " Is what hard? " She became animated only

when the conversation turned to people who tease or stare

at her brother. " I give them an extra dirty look with a

swear or two, " Amy said.

Later, in an e-mail message, Amy was freer with her

feelings. Therapy was a waste, she wrote, " because I

realized they couldn't do anything so I just shut down. "

" I keep it all to myself, " Amy added. " But when I can't

keep it in any more, I just sit in my room and cry for

hours. If my parents catch me crying, I just say hormones

kicked in and sometimes that's true. "

Mark Plage, by his own account, feels less distress.

can certainly be annoying, but Mark is used to it and sees

the silver lining. " He brings us together more, because

we're in it as a family, " Mark said.

Still, he is hyper-vigilant, more an auxiliary parent than

a brother to no matter how many times his parents

tell him that it is not his job. One blustery evening, for

instance, his mother was enjoying a cup of tea when,

upstairs, 's steady gait turned to jump-up-and-down

pounding and his high-pitched singsong to a shriek. That

usually means his brother is happy, Mark said, but you can

never be too careful.

" I'm going up to check on him, " he said.

http://www.nytimes.com/2004/12/10/health/10siblings.html?ex=1103780009 & ei=1 & en=7\

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