Re: FW: Different for decades & Midlife Diagnosis

[Guest guest]

,

You can always use any article posted to the board(s) or in the

Files/Articles section unless it's written by one of our members, in

which case you must ask first.

But anything that comes from a newspaper is fair game for public

reading and usage as long as you do not publish it or claim the

material as your own.

Tom

>

>

Thanks for a thouroughly informative post, could I possible use

parts of it to help my mum understand the condition?

>

> Kind Regards,

>

[Guest guest]

Sure! It was an article someone forwarded to

me. I would think you should credit the

author of the article to preserve copy write laws.

Wendi

Re:

FW: Different for decades & Midlife Diagnosis

Thanks for a thouroughly informative post, could I

possible use parts

of it to help my mum understand the condition?

Kind Regards,

> fyi

>

> Different for decades

>

> Adults with Asperger Syndrome strive to fit

in

>

> Saturday, November 13, 2004

>

> BY KATHLEEN O'BRIEN

>

> Star-Ledger Staff

>

> Geeky. Clueless. Loner.

Loser. Just plain odd.

>

> All their lives, they have heard these words

and society's ruthless

> verdict that, try as they might, they can

never achieve that

> indefinable state of " fitting in. "

>

> Finally these people are hearing a new word:

Asperger's. At long

> last, medicine has a label for their quirks.

>

> " Before I got a diagnosis, even I

thought I was crazy, " said one

man

> attending a Middlesex support group. " I

thought I was weird,

strange.

> And I didn't know why. "

>

> Asperger Syndrome is a neuro-biological

disorder, a specific form

of

> high-functioning autism in which the

individual has difficulty

> picking up social cues from others. It

accounts for roughly 9

percent

> of autism cases, according to the New Jersey

Center for Outreach

and

> Services to the Autism Community. Males are

four times as likely to

> have the lifelong disorder as females.

>

> Unlike the classically autistic, however,

" Aspies, " as some of them

> like to call themselves, are highly verbal.

Often they can't stop

> talking about bizarrely narrow pet interests.

>

> " Words are their lifeline. They talk

before they walk, " said Fred

> Volkmar, a child psychiatrist at the Yale

Child Study Center and co-

> editor of " Asperger Syndrome "

(Guilford Publications, $55). " The

> problem is their deficits are masked by their

verbal skills. " Since

> other people don't perceive a true

disability, they assume the

> Aspie's conversational style is willful, or

that he's being

> thoughtless or just plain difficult.

>

> " When you look normal, people expect you

to be normal, " said Sue

> Shikiar of South Orange, whose brother wasn't

diagnosed until he

was

> in his early 50s.

>

> It also differs from regular autism in that

Aspies usually crave

> social interaction and are astute enough to

notice -- and rue --

> their inability to secure it.

>

> The disorder gets its name from Hans

Asperger, a Viennese medical

> student who wrote his 1944 thesis about a

group of highly

intelligent

> boys who had extreme difficulty making

friends. But it was not

> recognized as an official diagnosis in the

United States until

1994.

>

> In the last decade, diagnosis of school-aged

children has become

> commonplace; rare is the school district

untouched by Asperger's.

> That first wave of Aspies is just now

entering young adulthood,

> having reaped the benefit of everything from

occupational therapy

to

> social-skills training.

>

> They will most likely have sunnier futures

than today's older

> Asperger adults, some of whom weren't

diagnosed until well into

> middle age, say experts. " We know for

autism that early diagnosis

can

> lead to significant improvement for them, and

there's every reason

to

> believe the same will be true for

Asperger's, " Volkmar said.

>

> This is not their story.

>

> Instead, it is about adults who weren't

diagnosed until they were

30,

> 40 or 50. Growing up, they endured decades of

misdiagnosis and

> misunderstanding. They may be the 53-year-old

who still lives at

home

> with his worried parents; the 30-year-old

overnight stock boy at

the

> supermarket whose co-workers relentlessly

play mean-spirited jokes

on

> him; or the twentysomething man who is

enthusiastically teaching

> himself one foreign language after another,

while working just 12

> hours a week at the local dollar store.

>

> On the mildest end of the disorder are people

who are married and

> gainfully employed at sophisticated jobs --

yet still are perceived

> as eccentric, odd or " just a little

off. " They have no need to

attend

> any support group. They may include, as one

expert joked, " the

senior

> faculty of any major college math or

engineering department. "

>

> " Many of these people are pretty

successful, as artists,

> mathematicians, scholars, " said Walter

Zahorodny, assistant

professor

> of pediatrics at New Jersey Medical School,

Newark, and director of

> New Jersey's " Answers for Autism "

survey. " Many do achieve a career

> and can be successful in their occupation.

They're successful in

most

> of the ways we gauge success, with jobs and

families. "

>

> Yet, on the other end are severe cases,

adults who can't even

attend

> an Asperger's support group because of their

social discomfort. At

a

> recent meeting in Freehold, one mother

arrived by herself, saying

of

> her adult son, " He wouldn't be able to

do the eye contact that all

of

> you have. "

>

> Aspies have their strengths: They are eager

to please; have

fantastic

> rote memories; follow rules exactly, and

often are skilled in math,

> writing, music or computers.

>

> Undercutting those strengths are their

rigidity about rules and

> routines; clumsiness; hypersensitivity to

certain textures, foods

or

> noises, or their overriding inability to

" read " others. Unable to

> monitor the emotions of others, they may also

have trouble taking

> their own emotional temperature, so to speak.

They may ignore

> uncomfortable emotions until the build-up

triggers a meltdown.

>

> Yet there are infinite ways these traits can

combine -- leading

> people in the autism field to say, " If

you've seen one

Asperger's ...

> you've seen one Asperger's. "

>

> There is no specific course of treatment or

cure for Asperger's,

> which is a lifelong condition, according to

the National Institute

of

> Neurological Disorders and Stroke. While

Aspies have a better

> prognosis than those with other forms of

autism, they are at

> increased risk to develop mood problems such

as depression and

> anxiety.

>

> Over the years, adults with Asperger's have

had neither help nor

> understanding. Most were subjected to hideous

amounts of teasing,

> bullying and outright social ostracism when

growing up. As a

result,

> as adults they are the kind of people who,

when they receive an

> invitation to their high school reunion,

can't throw it in the

trash

> fast enough.

>

> " It didn't matter what I was doing, I

was picked on. I was thought

of

> as the weird one. It didn't matter what I

said, " said a 29-year-old

> Piscataway man who attends a social-skills

class once a week. " Even

> when I didn't say anything, they'd pick on me

for not saying

> anything. You couldn't win. "

>

> Early intervention? Sorry, too late. Theirs

is a tale of lost

> opportunities.

>

> And what of their parents? Most have seen it

all, from discouraging

> school reports to misdirected treatments.

Many endured the

> implication that they themselves had

separation issues with their

> clingy, dependent children.

>

> Florence Cohen, of Marlboro, heard both

criticism and praise for

her

> handling of her son -- both of them off the

mark. When he was

> originally diagnosed with classic autism, she

was wounded by the

> scientific community's theory that she was a

" refrigerator mom "

whose

> coldness was partly to blame.

>

> " That was devastating. Just when you

needed to be strong, it made

you

> weak, " she said.

>

> Yet when her son succeeded academically, she

was praised for her

> great ability to extract such performance

from an autistic student.

> Both verdicts were inaccurate, a reflection

of medicine's

> bewilderment in the face of kids who were

betwixt and between the

> diagnostic categories. (Her son now lives in

a supported apartment

> and works in a mailroom.)

>

> These parents are a special group whose

peaceful acceptance of

their

> children contrasts with typical modern

parenting, with its emphasis

> on relentless striving and improvement of

one's progeny. Abraded by

> decades of disappointment, what is left is a

hard kernel of calm

> love.

>

> In most illnesses, medical science notices it

first in adults, then

> gradually realizes it may strike children as

well. Asperger's has

> been the reverse -- noticed first in children

and only belatedly in

> adults. In fact, support groups report it is

common for an adult to

> realize he has Asperger's only after the

school system has

diagnosed

> one of his children.

>

> " No one knows who they are or what they

are, " said Shikiar. " They

> aren't in the school system, so who's going

to diagnose them? The

> supermarket clerk? The guy at

Mc's? "

>

> Regardless of age, one of the telltale traits

of the disorder is

the

> penchant for a deep interest in a narrow

topic, almost to the point

> of excluding normal interests. Aspies might

memorize train

schedules,

> movie dialogue or everything there is to know

about the solar

system.

> Indeed, in the early years, parents might

believe their child is

> precocious.

>

> What makes this preoccupation cross the line

is the Aspie's

inability

> to sense when others have become bored by the

topic.

>

> Volkmar, the Yale autism expert, tried to

explain the

difference: " If

> a kid has a rock collection he keeps under

his bed, no problem. If

> the only thing he's able to focus on is

rocks, or if the family has

> to drive 1,500 miles out of its way to see an

unusual rock

formation,

> that's Asperger's. "

>

> Volkmar tells of one boy so fixated on the

Weather Channel that the

> local school superintendent would consult him

before calling a snow

> day. " The problem was that all the kid

could talk about was the

> weather, " he said.

>

> In adolescence or beyond, if that obsession

is another person --

> whose disinterest the Aspie doesn't or can't

grasp -- the result

can

> look very much like stalking.

>

> In children, some of these traits can still

be seen as charming. In

> Hans Asperger's time, it was called the

" little professor "

syndrome,

> for example, which implies a certain

cuteness.

>

> But society is far less forgiving of those

same traits in adults,

> who, it is assumed, should have figured out

the unwritten social

code

> by now. In fact, science is only now

beginning to understand what

the

> disorder looks like in adults. (After all,

Asperger himself didn't

> bother to consider the future of the little

boys he studied.) Many

> health and social services professionals serving

adults still

haven't

> heard of it.

>

> To combat that ignorance, a support group for

Asperger's families

has

> written a pamphlet it intends to distribute

to clergy, marriage and

> family counselors, and neurologists -- the

frontline people who

might

> end up diagnosing an adult. The pamphlet,

" Living in a World They

> Don't Understand, " will also be sent to

every state legislator,

said

> Meyer of dale, coordinator of an

adult chapter of ASPEN,

> the Asperger Syndrome Education Network.

>

> Given that there is no cure, what difference

can a mere diagnosis

> make? It carries practical benefits. Adults

with Asperger's can

> qualify for Supplemental Security Income

through Social Security

and

> can apply for government benefits such as

vocational job coaching

or

> supervised housing -- although that has a

very long waiting list.

>

> It also helps them confront the behavioral

obstacles that keep them

> from achieving success in the two arenas

Freud called " the

> cornerstones of our humanness " : love and

work.

>

> " They want to fined someone to love and

who loves them, and they

want

> to have a meaningful career, " said Jed

Baker, a clinical

psychologist

> who runs an adult Asperger's social skills

group at his office in

> Somerset. There, clients discuss problems

they're having at work or

> in relationships.

>

> At a recent session, Loscialo, 26, of

Lebanon, said his

goals

> were " to learn to say the right stuff so

I don't lose my job. " (He

> tends to overwhelm both his boss and the

customers with

enthusiastic

> conversation.) He also wants tips on getting

a girlfriend.

>

> Another young man, who works at a

developmental disabilities

center,

> said he has mixed emotions when he sees young

Asperger's kids

getting

> the therapy he never received as a child.

He's glad they're getting

> it, but envious, too.

>

> On the wall is a laminated chart explaining

how to

converse. " Getting

> to know new people " advises them to ask

about work, hobbies or

> family. " Keep conversations going "

tells them to ask follow-up

> questions, like " How? " or

" What else? "

>

> Some sit in silence; others can't seem to

stop talking. Baker

gently

> guides both types towards the normal

give-and-take of a group

> discussion.

>

> If someone in the group has a job interview,

they do a mock run-

> through. When one of their number gets a job,

they all go out for

> pizza. " Many of our members report this

is their only outlet

> socially, " Baker said. " Most of the

adults have a long history of

> being teased and picked on. It's very healing

when they find people

> who are very tolerant. "

>

> It is harder to work with adults, Baker

reports, simply because

> they're on their own during the week. With

children, parents and

> teachers report problem areas to him and can

prompt their children

to

> use the new skills they've learned. The

adults have to remember

> themselves; Baker sends several on their way

with little " cheat

> sheet " scripts for tricky situations.

>

> " It turns out you can't teach

everything, so you have to go for the

> biggies, " said Yale's Volkmar, who does

similar social-skills

> therapy. " But if they're motivated, and

the teacher is motivated,

you

> can teach them a lot, " he said.

>

> As for the obsessive hobbies, Aspies of any

age can be taught to

> ascertain whether they are boring people.

" The kid who talks about

> rocks can be taught to ask every five

minutes, 'Are you getting

bored

> with all this rock talk?' Volkmar said. (So

far, however, medicine

> has found no way to free that same kid from

the urge to talk about

> rocks.)

>

> At the very least, a diagnosis also helps

their loved ones

understand

> them better. " Information is golden in

this disorder, it truly is, "

> said Rodman, who founded the Cape

Cod-based Families of

Adults

> Afflicted with Asperger's Syndrome. Her

husband's late-in-life

> diagnosis, in 1999, helped her understand

that his detachment and

> isolation weren't intended to hurt.

>

> " Asperger's is a dictator, " she

said. " They don't have a choice. "

>

> It also helped her stop expecting things he

was incapable of

giving.

> In that respect, the diagnosis improved her

life by changing her,

not

> him. " The families have to change their

expectations -- and that's

a

> heck of a thing to ask of them, " she

said.

>

> Some adult Aspies are beginning to take

control over the common

goal

> of improving their social lives. One Milltown

support group just

for

> Asperger's people (minus their relatives),

Autism Spectrum Adult

> Issues, recently broke from its typical

agenda of group discussion

to

> schedule a night out bowling.

>

> But might it simply be too late for

intervention to help? The

experts

> are assuming it isn't.

>

> " Things get more ingrained when people

get older. But I wouldn't

want

> to give up on anybody, " said Volkmar.

" With many of these people,

> they haven't had any intervention, so how

would we know? "

>

>

>

> ..........

>

>

> : Midlife diagnosis

>

> Saturday, November 13, 2004

>

> BY KATHLEEN O'BRIEN

>

> [Newark] Star-Ledger Staff

>

> On her deathbed, Sue Shikiar's mother said to

her: " is not

your

> problem. "

> , the older brother who still lived

with her elderly parents

in

> Springfield into his 50s. , who, as a

child, sat on the floor

> reading encyclopedias but whose obvious

intellect never quite

> translated

> into success. , whose outbursts had

cost him jobs over the

> years.

>

> Mourning her mother's death, and overwhelmed

with the

responsibility

> of

> looking after both her brother and her

father, Shikiar went to a

> psychiatrist for help. He, in turn, became

intrigued with ,

and

> after a lengthy visit to the family home,

gave the South Orange

woman

> the diagnosis: Asperger's.

>

> " That meant the world to me. There's

such freedom in getting a

> diagnosis

> -- even if it's bad news, " she said.

" If I could contact my mother

one

> more time, it would be, 'Guess what?

has Asperger's!' "

>

> At one point before the diagnosis, she sought

the help of the

family's

> rabbi, still thinking that maybe getting him

a job could magically

> save

> the situation. loved working with the

elderly, she told the

> rabbi. Perhaps he knew of an older person

with whom could

live

> and provide some care? She'll never forget

the rabbi's incredulous

> statement of what he thought was obvious:

" But ... can't

care

> for

> anyone. needs someone to care for

him. "

>

> In the four years since her mother's death,

she has taken legal

steps

> to

> become her brother's guardian, eventually

securing a place for him a

> group home in Hillsborough operated by Allies

Inc., a nonprofit

> organization helping the developmentally

disabled. He is also

enrolled

> in a day program of work and recreation run

by Somerset County Arc

> (formerly the Association for Retarded

Citizens), even though he is

> not

> retarded.

>

> It's far from perfect, she concedes, mostly

because there are no

> programs for someone like , now 56.

" But it's so much better

> than

> him wandering around from room to room in my

father's house. He has

a

> life now. He gets out every day. He has

someplace to go, " she said.

>

> knows who he is, he knows where he is,

he knows why he's

there,

> although he's not happy about it. He'd like

to live closer to

friends

> and family. He has a friendly, gentle

demeanor with visitors, but

> avoids

> any eye contact beyond a furtive check to

make sure the person's

still

> there.

>

> He takes a bus to the Arc work site every day

to do piece work --

> stuffing envelopes and the like. He has made

some friends there. On

> weekends, a group-home staffer often drives

him to visit a lady

friend

> in Wayne, and they recently found a local

synagogue where he can

> attend

> services.

>

> By all accounts somewhat grumpy by nature,

calls his work

> program

> " disgusting. " " And we get paid

very poorly for it, " he adds. (Wages

> are

> prorated from the minimum wage, based on time

studies.) He much

> prefers

> Thursdays, when he folds laundry at a local

nursing home, part of

> a " job

> sampling " program that aims to find his

employment strengths.

> , his job developer, is looking for a

regular job for him.

>

> His sister, meanwhile, is on a one-woman

crusade to inform people

> about

> Asperger's. She jokes that she introduces

herself these days by

> saying,

> " Hi, I'm , and I have a brother

with Asperger's. "

>

> doesn't like her to do this, calling

her " too gung-ho " and

> seeing

> any discussion of Asperger's as criticism.

(She predicted he

wouldn't

> want his name used, and he didn't, picking a

pseudonym for

> publication.)

>

> Any talk of Asperger's makes him

uncomfortable, and he says of the

> diagnosis, " I'm not in agreement. "

>

> Yet it turns out the reason he doesn't think

he has Asperger's is

that

> he feels he doesn't measure up to Bill Gates,

about whom there has

> been

> speculation he may have Asperger's. Some in

the Asperger's community

> point to Gates as a sign of hope for

everyone, but that just makes

> feel small in comparison.

>

> " Bill Gates, the most successful person

in the country, has the

> problem.

> And look what he's done, " he says,

ticking off Gates' business

> successes. " And I just work at the

Arc. "

>

> But when the discussion moves to whether it

would've helped to have

> had

> a diagnosis during his childhood, talks

vividly about the

peer

> torment he endured all those years ago at

summer camp near Scranton:

> " Brutal is not the word for it. " He

still recalls retaliating by

> hitting

> a camper with a broom.

>

> Although unwilling to concede entirely that

he has Asperger's, he

> knows

> his childhood would've been happier had

people correctly diagnosed

> him.

> " In the time period I grew up, it was no

good. But it (Asperger's)

> didn't exist, " he said. He sums up his

own childhood

with: " Asperger's

> disease or no Asperger's disease, boy oh boy,

what a mess. "

>

> For his sister, however, the label has

changed not only the kind of

> life

> she can provide for her brother, but her own

feelings about him.

>

> " Yes, he's odd, but now I know who he is

and what he is, " she

said. " I

> have no anger. I can love him now. "

FAM Secret

Society is a community based on respect, friendship, support and acceptance.

Everyone is valued. Always remember that.

[Guest guest]

Oops sorry had a kind of 'overload day' not quite with it, came on

computer for some time out; but my processing is way down, sorry.

Kind Regards,

> > fyi

> >

> > Different for decades

> >

> > Adults with Asperger Syndrome strive to fit in

> >

> > Saturday, November 13, 2004

> >

> > BY KATHLEEN O'BRIEN

> >

> > Star-Ledger Staff

> >

> > Geeky. Clueless. Loner. Loser. Just plain odd.

> >

> > All their lives, they have heard these words and society's

ruthless

> > verdict that, try as they might, they can never achieve that

> > indefinable state of " fitting in. "

> >

> > Finally these people are hearing a new word: Asperger's. At long

> > last, medicine has a label for their quirks.

> >

> > " Before I got a diagnosis, even I thought I was crazy, " said one

> man

> > attending a Middlesex support group. " I thought I was weird,

> strange.

> > And I didn't know why. "

> >

> > Asperger Syndrome is a neuro-biological disorder, a specific form

> of

> > high-functioning autism in which the individual has difficulty

> > picking up social cues from others. It accounts for roughly 9

> percent

> > of autism cases, according to the New Jersey Center for Outreach

> and

> > Services to the Autism Community. Males are four times as likely

to

> > have the lifelong disorder as females.

> >

> > Unlike the classically autistic, however, " Aspies, " as some of

them

> > like to call themselves, are highly verbal. Often they can't stop

> > talking about bizarrely narrow pet interests.

> >

> > " Words are their lifeline. They talk before they walk, " said Fred

> > Volkmar, a child psychiatrist at the Yale Child Study Center and

co-

> > editor of " Asperger Syndrome " (Guilford Publications, $55). " The

> > problem is their deficits are masked by their verbal skills. "

Since

> > other people don't perceive a true disability, they assume the

> > Aspie's conversational style is willful, or that he's being

> > thoughtless or just plain difficult.

> >

> > " When you look normal, people expect you to be normal, " said Sue

> > Shikiar of South Orange, whose brother wasn't diagnosed until he

> was

> > in his early 50s.

> >

> > It also differs from regular autism in that Aspies usually crave

> > social interaction and are astute enough to notice -- and rue --

> > their inability to secure it.

> >

> > The disorder gets its name from Hans Asperger, a Viennese medical

> > student who wrote his 1944 thesis about a group of highly

> intelligent

> > boys who had extreme difficulty making friends. But it was not

> > recognized as an official diagnosis in the United States until

> 1994.

> >

> > In the last decade, diagnosis of school-aged children has become

> > commonplace; rare is the school district untouched by Asperger's.

> > That first wave of Aspies is just now entering young adulthood,

> > having reaped the benefit of everything from occupational therapy

> to

> > social-skills training.

> >

> > They will most likely have sunnier futures than today's older

> > Asperger adults, some of whom weren't diagnosed until well into

> > middle age, say experts. " We know for autism that early diagnosis

> can

> > lead to significant improvement for them, and there's every

reason

> to

> > believe the same will be true for Asperger's, " Volkmar said.

> >

> > This is not their story.

> >

> > Instead, it is about adults who weren't diagnosed until they were

> 30,

> > 40 or 50. Growing up, they endured decades of misdiagnosis and

> > misunderstanding. They may be the 53-year-old who still lives at

> home

> > with his worried parents; the 30-year-old overnight stock boy at

> the

> > supermarket whose co-workers relentlessly play mean-spirited

jokes

> on

> > him; or the twentysomething man who is enthusiastically teaching

> > himself one foreign language after another, while working just 12

> > hours a week at the local dollar store.

> >

> > On the mildest end of the disorder are people who are married and

> > gainfully employed at sophisticated jobs -- yet still are

perceived

> > as eccentric, odd or " just a little off. " They have no need to

> attend

> > any support group. They may include, as one expert joked, " the

> senior

> > faculty of any major college math or engineering department. "

> >

> > " Many of these people are pretty successful, as artists,

> > mathematicians, scholars, " said Walter Zahorodny, assistant

> professor

> > of pediatrics at New Jersey Medical School, Newark, and director

of

> > New Jersey's " Answers for Autism " survey. " Many do achieve a

career

> > and can be successful in their occupation. They're successful in

> most

> > of the ways we gauge success, with jobs and families. "

> >

> > Yet, on the other end are severe cases, adults who can't even

> attend

> > an Asperger's support group because of their social discomfort.

At

> a

> > recent meeting in Freehold, one mother arrived by herself, saying

> of

> > her adult son, " He wouldn't be able to do the eye contact that

all

> of

> > you have. "

> >

> > Aspies have their strengths: They are eager to please; have

> fantastic

> > rote memories; follow rules exactly, and often are skilled in

math,

> > writing, music or computers.

> >

> > Undercutting those strengths are their rigidity about rules and

> > routines; clumsiness; hypersensitivity to certain textures, foods

> or

> > noises, or their overriding inability to " read " others. Unable to

> > monitor the emotions of others, they may also have trouble taking

> > their own emotional temperature, so to speak. They may ignore

> > uncomfortable emotions until the build-up triggers a meltdown.

> >

> > Yet there are infinite ways these traits can combine -- leading

> > people in the autism field to say, " If you've seen one

> Asperger's ...

> > you've seen one Asperger's. "

> >

> > There is no specific course of treatment or cure for Asperger's,

> > which is a lifelong condition, according to the National

Institute

> of

> > Neurological Disorders and Stroke. While Aspies have a better

> > prognosis than those with other forms of autism, they are at

> > increased risk to develop mood problems such as depression and

> > anxiety.

> >

> > Over the years, adults with Asperger's have had neither help nor

> > understanding. Most were subjected to hideous amounts of teasing,

> > bullying and outright social ostracism when growing up. As a

> result,

> > as adults they are the kind of people who, when they receive an

> > invitation to their high school reunion, can't throw it in the

> trash

> > fast enough.

> >

> > " It didn't matter what I was doing, I was picked on. I was

thought

> of

> > as the weird one. It didn't matter what I said, " said a 29-year-

old

> > Piscataway man who attends a social-skills class once a

week. " Even

> > when I didn't say anything, they'd pick on me for not saying

> > anything. You couldn't win. "

> >

> > Early intervention? Sorry, too late. Theirs is a tale of lost

> > opportunities.

> >

> > And what of their parents? Most have seen it all, from

discouraging

> > school reports to misdirected treatments. Many endured the

> > implication that they themselves had separation issues with their

> > clingy, dependent children.

> >

> > Florence Cohen, of Marlboro, heard both criticism and praise for

> her

> > handling of her son -- both of them off the mark. When he was

> > originally diagnosed with classic autism, she was wounded by the

> > scientific community's theory that she was a " refrigerator mom "

> whose

> > coldness was partly to blame.

> >

> > " That was devastating. Just when you needed to be strong, it made

> you

> > weak, " she said.

> >

> > Yet when her son succeeded academically, she was praised for her

> > great ability to extract such performance from an autistic

student.

> > Both verdicts were inaccurate, a reflection of medicine's

> > bewilderment in the face of kids who were betwixt and between the

> > diagnostic categories. (Her son now lives in a supported

apartment

> > and works in a mailroom.)

> >

> > These parents are a special group whose peaceful acceptance of

> their

> > children contrasts with typical modern parenting, with its

emphasis

> > on relentless striving and improvement of one's progeny. Abraded

by

> > decades of disappointment, what is left is a hard kernel of calm

> > love.

> >

> > In most illnesses, medical science notices it first in adults,

then

> > gradually realizes it may strike children as well. Asperger's has

> > been the reverse -- noticed first in children and only belatedly

in

> > adults. In fact, support groups report it is common for an adult

to

> > realize he has Asperger's only after the school system has

> diagnosed

> > one of his children.

> >

> > " No one knows who they are or what they are, " said Shikiar. " They

> > aren't in the school system, so who's going to diagnose them? The

> > supermarket clerk? The guy at Mc's? "

> >

> > Regardless of age, one of the telltale traits of the disorder is

> the

> > penchant for a deep interest in a narrow topic, almost to the

point

> > of excluding normal interests. Aspies might memorize train

> schedules,

> > movie dialogue or everything there is to know about the solar

> system.

> > Indeed, in the early years, parents might believe their child is

> > precocious.

> >

> > What makes this preoccupation cross the line is the Aspie's

> inability

> > to sense when others have become bored by the topic.

> >

> > Volkmar, the Yale autism expert, tried to explain the

> difference: " If

> > a kid has a rock collection he keeps under his bed, no problem.

If

> > the only thing he's able to focus on is rocks, or if the family

has

> > to drive 1,500 miles out of its way to see an unusual rock

> formation,

> > that's Asperger's. "

> >

> > Volkmar tells of one boy so fixated on the Weather Channel that

the

> > local school superintendent would consult him before calling a

snow

> > day. " The problem was that all the kid could talk about was the

> > weather, " he said.

> >

> > In adolescence or beyond, if that obsession is another person --

> > whose disinterest the Aspie doesn't or can't grasp -- the result

> can

> > look very much like stalking.

> >

> > In children, some of these traits can still be seen as charming.

In

> > Hans Asperger's time, it was called the " little professor "

> syndrome,

> > for example, which implies a certain cuteness.

> >

> > But society is far less forgiving of those same traits in adults,

> > who, it is assumed, should have figured out the unwritten social

> code

> > by now. In fact, science is only now beginning to understand what

> the

> > disorder looks like in adults. (After all, Asperger himself

didn't

> > bother to consider the future of the little boys he studied.)

Many

> > health and social services professionals serving adults still

> haven't

> > heard of it.

> >

> > To combat that ignorance, a support group for Asperger's families

> has

> > written a pamphlet it intends to distribute to clergy, marriage

and

> > family counselors, and neurologists -- the frontline people who

> might

> > end up diagnosing an adult. The pamphlet, " Living in a World They

> > Don't Understand, " will also be sent to every state legislator,

> said

> > Meyer of dale, coordinator of an adult chapter of

ASPEN,

> > the Asperger Syndrome Education Network.

> >

> > Given that there is no cure, what difference can a mere diagnosis

> > make? It carries practical benefits. Adults with Asperger's can

> > qualify for Supplemental Security Income through Social Security

> and

> > can apply for government benefits such as vocational job coaching

> or

> > supervised housing -- although that has a very long waiting list.

> >

> > It also helps them confront the behavioral obstacles that keep

them

> > from achieving success in the two arenas Freud called " the

> > cornerstones of our humanness " : love and work.

> >

> > " They want to fined someone to love and who loves them, and they

> want

> > to have a meaningful career, " said Jed Baker, a clinical

> psychologist

> > who runs an adult Asperger's social skills group at his office in

> > Somerset. There, clients discuss problems they're having at work

or

> > in relationships.

> >

> > At a recent session, Loscialo, 26, of Lebanon, said his

> goals

> > were " to learn to say the right stuff so I don't lose my job. "

(He

> > tends to overwhelm both his boss and the customers with

> enthusiastic

> > conversation.) He also wants tips on getting a girlfriend.

> >

> > Another young man, who works at a developmental disabilities

> center,

> > said he has mixed emotions when he sees young Asperger's kids

> getting

> > the therapy he never received as a child. He's glad they're

getting

> > it, but envious, too.

> >

> > On the wall is a laminated chart explaining how to

> converse. " Getting

> > to know new people " advises them to ask about work, hobbies or

> > family. " Keep conversations going " tells them to ask follow-up

> > questions, like " How? " or " What else? "

> >

> > Some sit in silence; others can't seem to stop talking. Baker

> gently

> > guides both types towards the normal give-and-take of a group

> > discussion.

> >

> > If someone in the group has a job interview, they do a mock run-

> > through. When one of their number gets a job, they all go out for

> > pizza. " Many of our members report this is their only outlet

> > socially, " Baker said. " Most of the adults have a long history of

> > being teased and picked on. It's very healing when they find

people

> > who are very tolerant. "

> >

> > It is harder to work with adults, Baker reports, simply because

> > they're on their own during the week. With children, parents and

> > teachers report problem areas to him and can prompt their

children

> to

> > use the new skills they've learned. The adults have to remember

> > themselves; Baker sends several on their way with little " cheat

> > sheet " scripts for tricky situations.

> >

> > " It turns out you can't teach everything, so you have to go for

the

> > biggies, " said Yale's Volkmar, who does similar social-skills

> > therapy. " But if they're motivated, and the teacher is motivated,

> you

> > can teach them a lot, " he said.

> >

> > As for the obsessive hobbies, Aspies of any age can be taught to

> > ascertain whether they are boring people. " The kid who talks

about

> > rocks can be taught to ask every five minutes, 'Are you getting

> bored

> > with all this rock talk?' Volkmar said. (So far, however,

medicine

> > has found no way to free that same kid from the urge to talk

about

> > rocks.)

> >

> > At the very least, a diagnosis also helps their loved ones

> understand

> > them better. " Information is golden in this disorder, it truly

is, "

> > said Rodman, who founded the Cape Cod-based Families of

> Adults

> > Afflicted with Asperger's Syndrome. Her husband's late-in-life

> > diagnosis, in 1999, helped her understand that his detachment and

> > isolation weren't intended to hurt.

> >

> > " Asperger's is a dictator, " she said. " They don't have a choice. "

> >

> > It also helped her stop expecting things he was incapable of

> giving.

> > In that respect, the diagnosis improved her life by changing her,

> not

> > him. " The families have to change their expectations -- and

that's

> a

> > heck of a thing to ask of them, " she said.

> >

> > Some adult Aspies are beginning to take control over the common

> goal

> > of improving their social lives. One Milltown support group just

> for

> > Asperger's people (minus their relatives), Autism Spectrum Adult

> > Issues, recently broke from its typical agenda of group

discussion

> to

> > schedule a night out bowling.

> >

> > But might it simply be too late for intervention to help? The

> experts

> > are assuming it isn't.

> >

> > " Things get more ingrained when people get older. But I wouldn't

> want

> > to give up on anybody, " said Volkmar. " With many of these people,

> > they haven't had any intervention, so how would we know? "

> >

> >

> >

> > ..........

> >

> >

> > : Midlife diagnosis

> >

> > Saturday, November 13, 2004

> >

> > BY KATHLEEN O'BRIEN

> >

> > [Newark] Star-Ledger Staff

> >

> > On her deathbed, Sue Shikiar's mother said to her: " is not

> your

> > problem. "

> > , the older brother who still lived with her elderly

parents

> in

> > Springfield into his 50s. , who, as a child, sat on the

floor

> > reading encyclopedias but whose obvious intellect never quite

> > translated

> > into success. , whose outbursts had cost him jobs over the

> > years.

> >

> > Mourning her mother's death, and overwhelmed with the

> responsibility

> > of

> > looking after both her brother and her father, Shikiar went to a

> > psychiatrist for help. He, in turn, became intrigued with ,

> and

> > after a lengthy visit to the family home, gave the South Orange

> woman

> > the diagnosis: Asperger's.

> >

> > " That meant the world to me. There's such freedom in getting a

> > diagnosis

> > -- even if it's bad news, " she said. " If I could contact my

mother

> one

> > more time, it would be, 'Guess what? has Asperger's!' "

> >

> > At one point before the diagnosis, she sought the help of the

> family's

> > rabbi, still thinking that maybe getting him a job could

magically

> > save

> > the situation. loved working with the elderly, she told the

> > rabbi. Perhaps he knew of an older person with whom could

> live

> > and provide some care? She'll never forget the rabbi's incredulous

> > statement of what he thought was obvious: " But ... can't

> care

> > for

> > anyone. needs someone to care for him. "

> >

> > In the four years since her mother's death, she has taken legal

> steps

> > to

> > become her brother's guardian, eventually securing a place for

him a

> > group home in Hillsborough operated by Allies Inc., a nonprofit

> > organization helping the developmentally disabled. He is also

> enrolled

> > in a day program of work and recreation run by Somerset County Arc

> > (formerly the Association for Retarded Citizens), even though he

is

> > not

> > retarded.

> >

> > It's far from perfect, she concedes, mostly because there are no

> > programs for someone like , now 56. " But it's so much

better

> > than

> > him wandering around from room to room in my father's house. He

has

> a

> > life now. He gets out every day. He has someplace to go, " she

said.

> >

> > knows who he is, he knows where he is, he knows why he's

> there,

> > although he's not happy about it. He'd like to live closer to

> friends

> > and family. He has a friendly, gentle demeanor with visitors, but

> > avoids

> > any eye contact beyond a furtive check to make sure the person's

> still

> > there.

> >

> > He takes a bus to the Arc work site every day to do piece work --

> > stuffing envelopes and the like. He has made some friends there.

On

> > weekends, a group-home staffer often drives him to visit a lady

> friend

> > in Wayne, and they recently found a local synagogue where he can

> > attend

> > services.

> >

> > By all accounts somewhat grumpy by nature, calls his work

> > program

> > " disgusting. " " And we get paid very poorly for it, " he adds.

(Wages

> > are

> > prorated from the minimum wage, based on time studies.) He much

> > prefers

> > Thursdays, when he folds laundry at a local nursing home, part of

> > a " job

> > sampling " program that aims to find his employment strengths.

> > , his job developer, is looking for a regular job for him.

> >

> > His sister, meanwhile, is on a one-woman crusade to inform people

> > about

> > Asperger's. She jokes that she introduces herself these days by

> > saying,

> > " Hi, I'm , and I have a brother with Asperger's. "

> >

> > doesn't like her to do this, calling her " too gung-ho " and

> > seeing

> > any discussion of Asperger's as criticism. (She predicted he

> wouldn't

> > want his name used, and he didn't, picking a pseudonym for

> > publication.)

> >

> > Any talk of Asperger's makes him uncomfortable, and he says of the

> > diagnosis, " I'm not in agreement. "

> >

> > Yet it turns out the reason he doesn't think he has Asperger's is

> that

> > he feels he doesn't measure up to Bill Gates, about whom there

has

> > been

> > speculation he may have Asperger's. Some in the Asperger's

community

> > point to Gates as a sign of hope for everyone, but that just makes

> > feel small in comparison.

> >

> > " Bill Gates, the most successful person in the country, has the

> > problem.

> > And look what he's done, " he says, ticking off Gates' business

> > successes. " And I just work at the Arc. "

> >

> > But when the discussion moves to whether it would've helped to

have

> > had

> > a diagnosis during his childhood, talks vividly about the

> peer

> > torment he endured all those years ago at summer camp near

Scranton:

> > " Brutal is not the word for it. " He still recalls retaliating by

> > hitting

> > a camper with a broom.

> >

> > Although unwilling to concede entirely that he has Asperger's, he

> > knows

> > his childhood would've been happier had people correctly

diagnosed

> > him.

> > " In the time period I grew up, it was no good. But it (Asperger's)

> > didn't exist, " he said. He sums up his own childhood

> with: " Asperger's

> > disease or no Asperger's disease, boy oh boy, what a mess. "

> >

> > For his sister, however, the label has changed not only the kind

of

> > life

> > she can provide for her brother, but her own feelings about him.

> >

> > " Yes, he's odd, but now I know who he is and what he is, " she

> said. " I

> > have no anger. I can love him now. "

>

>

>

>

>

> FAM Secret Society is a community based on respect, friendship,

support

> and acceptance. Everyone is valued. Always remember that.

>

>

>

>

>

>