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Answer, but No Cure, for a Social Disorder That Isolates Many
NY Times ^ | April 29, 2004 | AMY HARMON

Posted on 04/29/2004 12:06:59 PM PDT by neverdem

Last July, Steven Miller, a university librarian, came across an article about a set of neurological conditions he had never heard of called autistic spectrum disorders. By the time he finished reading, his face was wet with tears.

"This is me," Mr. Miller remembers thinking in the minutes and months of eager research that followed. "To read about it and feel that I'm not the only one, that maybe it's O.K., maybe it's just a human difference, was extremely emotional. In a way it has changed everything, even though nothing has changed."

Mr. Miller, 49, who excels at his job but finds the art of small talk impossible to master, has since been given a diagnosis of Asperger's syndrome, an autistic disorder notable for the often vast discrepancy between the intellectual and social abilities of those who have it.

Because Asperger's was not widely identified until recently, thousands of adults like Mr. Miller — people who have never fit in socially — are only now stumbling across a neurological explanation for their lifelong struggles with ordinary human contact.

As Mr. Miller learned from the article, autism is now believed to encompass a wide spectrum of impairment and intelligence, from the classically unreachable child to people with Asperger's and a similar condition called high-functioning autism, who have normal intelligence and often superior skills in a given area. But they all share a defining trait: They are what autism researchers call "mind blind." Lacking the ability to read cues like body language to intuit what other people are thinking, they have profound difficulty navigating basic social interactions. The diagnosis is reordering their lives. Some have become newly determined to learn how to compensate.

They are filling up scarce classes that teach skills like how close to stand next to someone at a party, or how to tell when people are angry even when they are smiling. Others, like Mr. Miller, have decided to disclose their diagnosis, hoping to deflect the often-hostile responses their odd manners and miscues provoke. In some cases, it has helped. In others, it seemed only to elicit one more rejection.

This new wave of discovery among Aspies, as many call themselves, is also sending ripples through the lives of their families, soothing tension among some married couples, prompting others to call it quits. Parents who saw their adult children as lost causes or black sheep are fumbling for ways to help them, suddenly realizing that they are disabled, not stubborn or lazy.

For both Aspies and their families, relief that their difficulties are not a result of bad parenting or a fundamental character flaw is often coupled with acute disappointment at the news that there is no cure for the disorder and no drug to treat it.

"We are with Asperger's where we were 20 years ago with mental illness," said Lynda Geller, director of community services at the Cody Center for Autism in Stony Brook, N.Y. "It is thought to be your fault, you should just shape up, work harder, be nicer. The fact that your brain actually works differently so you can't is not universally appreciated."

Some Aspies interviewed asked to remain anonymous for fear of being stigmatized. But with the knowledge that their dysfunction is rooted in biology, many say remaining silent to pass as normal has become an even greater strain.

"I would like nothing better than to shout it out to everyone," a pastor in California whose Asperger's was just diagnosed wrote in an e-mail message. "But there is so much explanation and education that needs to happen that I risk being judged incompetent."

Some are finding solace in support groups where they are meeting others like themselves for the first time. And a growing number are beginning to celebrate their own unique way of seeing the world. They question the superiority of people they call "neurotypicals" or "N.T.'s"and challenge them to adopt a more enlightened, gentle outlook toward social eccentricities.

Asks the tag line of one online Asperger support group: "Is ANYONE really `normal?' "

Discovery: Finding Reason for Social Gaffes

In recent years, a growing awareness about autism has led to a sharp increase in children receiving special services for their autism disorders. But for many adults who came before them, the process of discovering the condition has been haphazard.

Mr. Miller, a senior academic librarian at the University of Wisconsin, Milwaukee, had searched for years for an explanation for what he saw as a personal failing, at one point buying stacks of self-help books. Many others sink into depression, their conditions misdiagnosed, or struggle without any help.

Now, autism centers intended for children are being flooded with adults who suspect they have Asperger's. Since the condition runs in families, psychologists treating autistic children are often the ones diagnosing it in parents or relatives.

Often the new diagnoses involve people who for years have been deemed rude, clueless or just plain weird because of their blunt comments or all-too-personal disclosures. They typically have a penchant for accuracy and a hard-wired dislike for the disruption of routine.

Unusually sensitive to light, touch and noise, some shrink from handshakes and hugs. Humor, which so often depends on tone of voice and familiarity with social customs, can be hard for them to comprehend. Although many have talents like memory for detail and an ability to focus intently for long periods, Aspies often end up underemployed and lonely. Unlike more severely impaired autistics, they often crave social intimacy, and they are acutely aware of their inability to get it.

Those with the condition often develop a passion for a narrow field that drives them to excel in it, but fail to realize when they are driving others crazy by talking about it. And they are reflexively honest, a trait that can be refreshing — or not.

On a recent afternoon at the Center for Brain Health at New York University, Louise Kavaldo, 57, who received a diagnosis of Asperger's last month, prepared to take some cognitive tests.

"Do you think my shirt is too tight?" she asked Isabel Dziobek, the researcher.

"No," Ms. Dziobek replied. "I like the way the green goes with your hat."

"Well I think your shirt is too tight," replied Ms. Kavaldo, who has a B.A. in sociology and works in early childhood education. "I think it's unprofessional."

Researchers say autism spectrum disorders are a result of a combination of perhaps 10 to 20 genes, plus environmental factors, that seem to cause the brain to exhibit less activity in its social and emotional centers. Unlike people with classic autism, which is often accompanied by mental retardation, those with Asperger's have normal language development and intelligence. First identified in 1946 by the Viennese physician Hans Asperger, the condition was little-known until it was added to the American psychiatric diagnostic manual in 1994. Only in the last few years have mental health professionals become widely aware of it.

The degree to which someone is affected may correlate with how many of the autism genes he or she has, some researchers say. About one in 165 people are thought to be on the autistic spectrum, although estimates vary.

The recent spike in diagnoses of autism in people who are generally able to function in society has prompted some to suggest that it is an excuse for bad behavior or the latest clinical fad. But psychologists and researchers say they are simply better able to recognize the condition now. While many people may have a few of the traits and just one or two of the genes, to qualify for an Asperger's diagnosis they typically must have developed obsessive interests and social difficulties at an early age that now significantly impair their ability to function.

Carl Pietruszka, 52, said that being found to have Asperger's had been a blow to a long-held fantasy. "It's been my hope for years and years that if I keep working at it, I'll find a strategy that will fix things, that if I practice enough, it'll be O.K.," Mr. Pietruszka said. "Now I know I'm working with Asperger's, which is going to be an ongoing thing. It'll get better, but it's not going to be O.K. That has me seriously bummed out."

Mr. Pietruszka, who was laid off from four engineering jobs over a decade, said colleagues had often ribbed him for being too serious and "not getting it."

"It doesn't make you feel good," he said. "It festers."

Instead of looking for work with a company where he would have to navigate office politics again, he has set up his own business as a home inspector in Harleysville, Pa., where clients have complimented his thoroughness.

Inspiration: Trying to Learn Hidden Curriculum

Pretending to be normal, even for a few hours, is mentally exhausting, many Aspies say. But for some, the diagnosis is an inspiration to master what autism experts call the hidden curriculum: social rules everyone knows but could never say how they learned.

A class taught by Mary Cohen, a psychologist at the University of Pennsylvania's new clinic for adult social learning disorders, is crowded with people whose conditions are newly diagnosed. The subject at a recent session was basic conversation. As the class watched from behind a two-way mirror, pairs of students tried talking to each other without lapsing into silence.

Then came the review: had it been a dialogue, or had someone gone on too long about the early history of Russia? Did they lean in? Eye contact, Dr. Cohen cautioned, should be regular but not "like you're boring a hole through them." Moving the eyebrows can help.

Gresham O'Malley, 33, a computer support technician, said he hoped the class might make it easier for him to find a girlfriend.

But classes like Dr. Cohen's are few and far between. Mostly, parents, siblings and spouses are left to explain such everyday social rules as which urinal to select (preferably not the one next to another that is occupied) and why a prospective employer does not have to be told about a punctuality problem.

At a support group for parents in Dix Hills, N.Y., the two-hour meeting runs late as more than two dozen participants trade notes about adult children who always had trouble making friends but now face more serious problems. After flubbing dozens of job interviews, many spend their days playing video games.

"Don't you get the advice, `Give him a kick in the pants?' " one father asks.

"Exactly," answers a mother. " `You're spoiling him.' "

"Our relatives will say, `He looks fine to me,' " adds another parent. "And he does look fine. That's not the point."

Some of the anger is directed at mental health professionals who as recently as two years ago failed to identify Asperger's when they saw it. But some parents also complain about the lack of tolerance for "weird" kids, and the weird adults they grow up to be.

"If my daughter was in a wheelchair, people would be opening doors for her," said Larry Berman, a salesman who attends a similar group in Philadelphia. "Wouldn't it make a quantum difference if instead of it all being on our kids to flex to meet the rest of the world, the rest of the world would meet them halfway?"

Aware that their missteps seem all the more shocking because they show no visible signs of disability, some are choosing to disclose their Asperger diagnosis in hopes of heading off social mishaps — or because they are in the middle of one.

When Eric Jorgensen, a programmer at Microsoft, confronted his boss's boss in a group meeting, his colleagues told him later that they were cringing, and he received a reprimand from his supervisor.

"I talked to my boss and said, `This is an example where I need help,' " said Mr. Jorgensen, who realized that he had Asperger's after his son's diagnosis of autism. Mr. Jorgensen's boss at the time, Ed Keith, had never heard of Asperger's. But he assigned a team member to form strategies with Mr. Jorgensen. In public meetings, they agreed, someone would throw a pen at him when he was going too far. Privately, they would tell him directly, rather than hint at it in ways he might not understand.

"They cared about me and I sensed that," Mr. Jorgensen said. It may have helped, too, that he is what Mr. Keith describes as "one of the best guys that I've ever worked with" at finding defects in the design of software. In the argument with their boss, Mr. Keith said, Mr. Jorgensen was clearly undiplomatic. "But he was right."

Not everyone is finding such enlightened responses.

When John Hatton, 40, of Boston, began to tell friends about his Asperger's diagnosis, they were skeptical.

"Almost everyone I contacted about this were either sort of perplexed or — I don't want to say hostile," said Mr. Hatton, who said he had been fired from more than 26 jobs over the last two decades and now received federal disability assistance. "They thought I had found an excuse or something."

Results: Saving Marriages, Ending Others

For troubled marriages, the diagnosis can be pivotal.

One Los Angeles woman remembers the precise angle of the sun coming through the library window when she first read about Asperger's. She had wanted to leave her marriage for years but blamed herself for failing to make it work. When her husband refused to discuss whether his condition contributed to their problems, she said, she was able to leave without guilt.

But for Janet and Eric Jorgensen, the diagnosis helped smooth out the rough edges. Ms. Jorgensen, attending a conference to learn more about her autistic son, said it was like "a light coming on" when she heard that adult family members were often given diagnoses only after a child had been identified as being on the autism spectrum.

"It just sort of hit me, `That explains Eric,' " she said.

He still says things that are callous, at least on the surface.

"She'll say something about how terrible her clothes look," Mr. Jorgensen explains. "I'll say, `Yes, honey, those are terrible-looking clothes,' when really she's wanting some affirmation that her clothes don't look terrible."

At those moments, Ms. Jorgensen now tells her husband that he is acting like an "ass burger," a running joke that defuses anger on both sides. But such exchanges have mostly disappeared because Ms. Jorgensen knows that she is unlikely to get what she wants that way.

Learning to be more direct herself was not so horrible.

"I would just go change the clothes," she said. "If I want affirmation I need to say, `I'm feeling a little insecure, can you give me reassurance?' "

United by their newfound identity, Asperger adults, so used to being outcasts, are finding themselves part of an unlikely community. Through online and in-person support groups, many are for the first time sharing the pains and occasional pleasures of feeling, as one puts it, "like extraterrestrials stranded on earth."

Emboldened by the strength of their numbers, they are also increasingly defying, or at least exploring, how to bend the social rules to which they have tried so hard to adapt.

Some brag about their high scores on the "autism quotient" test, developed by Cambridge University as a measure of autism in adults. "What's your `Rain Man' talent?" asked a recent subject line on an Aspie e-mail discussion list, referring to the movie starring Dustin Hoffman as an autistic savant. Answers included perfect memory for phone numbers and "annoying people by asking awkward questions."

At a recent meeting of the Manhattan adult support group, a woman explained that she "just wanted to see if I fit in the group."

A longtime member replied, "None of us fit in with the group."

Neurotypical friends had been invited to serve as "expert" panelists to field questions on the evening's topic: flirting. But the best advice came from the Aspies.

"I find that sometimes shutting up and just not talking often makes them think you're a good listener when in fact you're just not talking," said one participant.

Michael J. Carly, the group's leader, suggested: "How about, `Hi, I'm Michael. I really stink at flirting but would you like to go for a walk to the library or something?' "

The next generation of Asperger's adults may already be benefiting from an earlier diagnosis. After the condition was diagnosed in her son Jared at age 12, Nancy Johnson of Edmonds, Wash., was able to persuade his public school to provide a full-time aide who coached him on social skills for the next four years. Ms. Johnson learned how to rid Jared of some of his behavioral quirks, like his tendency to walk over to other tables in restaurants to get a better look at the food.

Ignoring his mother's concerns about his special interest ("I wouldn't have picked lizards," she says), Jared, now 19, has his path to becoming a renowned herpetologist all mapped out. After a rough time in middle school, where he says he finally learned the social consequences of picking his nose in public, he describes himself as "practically popular."

"It does seem like people with Asperger's, once they click, have a lot of advantages in life," Jared said. "It's like we stay tadpoles for longer, but once we're ready, we're no less of a frog."

TOPICS: Culture/Society; Extended News; News/Current Events; US: California; US: New York; US: Wisconsin
KEYWORDS: aspergers; aspergerssyndrome; autism; mentalhealth
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To: Travis McGee
Lighten up Travis. It was just a lame joke. You take yourselves too seriously. Plenty of folks deal with much worse than what you have to go through so excuse me if I'm not impressed with your melodramatic whinning.
141 posted on 04/30/2004 2:21:47 PM PDT by Godebert
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What's nice is that he doesn't care so he doesn't suffer rejection. Also, not caring may (perversely!) help the other kids not pick on him, since they always seem to close in on the ones to whom it really matters. And he's found his niche, being the electronics expert.

My son likes to help us with computer problems, but sometimes he thinks he can do more than he really can! Which can get you into trouble! Does Grandpa really need Napster? LOL.

142 posted on 04/30/2004 3:12:23 PM PDT by Yaelle
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To: Sloth
I think it is more of a social anxiety thing than an inability to recognize social rules, though.

Yep. Totally different. My son has no anxiety that I can see, but just doesn't and seemingly can't quite "get it." He is very outgoing.

143 posted on 04/30/2004 3:15:34 PM PDT by Yaelle
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To: RSmithOpt
He could also watch a cartoon, then draw scenes from it repeating ALL the dialog.

That is classic autie behavior!

144 posted on 04/30/2004 3:17:57 PM PDT by Yaelle
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To: Yaelle
Yes --- I think that's the difference --- he doesn't have a problem or any unhappiness over his social isolation which seems to just be his nature --- being a loner who is too busy in his own thoughts and projects to care about a social life.

The only time I've worried was when he was younger and would freak out in crowds --- for example on trips he would be fine camping, he'd be fine at the zoo or an amusement part but a crowded tourist place would cause him to behave very strangely --- almost like a wild animal --- and he would be almost incoherent when asked why he was acting the way he was. He'd say he didn't know --- but his behavior was definitely weird --- running off, hiding, purposely getting lost, darting around and having outbursts --- not shyness but something else. But since that was at ages below 10, I didn't pay much attention and just kept him out of those situations, in school he had no such problem and it seems to be something he's outgrown but I doubt he'd ever do well living in the city or be happy being in crowds of people. It was at those few times though he would actually act autistic but to me if it's that rarely then it's still within normal and he wouldn't need any kind of label.

Similar to my feelings on ADHD --- a real disorder or chemical imbalance does exist but the labels and the drugs that go with the label are given out too commonly. If you have a child that doesn't like to sit still for 6 hours straight they can get that label ---- but they might be quite normal. I think sometimes the problem is really trying to put normal square pegs into the wrong holes, they are normal but the situation they may be in is what doesn't fit.

145 posted on 04/30/2004 3:26:30 PM PDT by FITZ
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Your son has/had definite symptoms of being on the autistic spectrum. I can't diagnose, but the running and freaking out in crowds, and his happily staying out of all things social, do sound like it. Really, some might disagree with me, but I wouldn't even bother to go have him diagnosed because you all are fine and he is fine and he is finding his way in life and has his niche.

There is no good treatment anyway. I am glad my son was diagnosed because it finally meant that it "wasn't anything I did wrong." However, there are no drugs to fix it (and I am glad), and "social skills classes" are of no use as I have found. Unless possibly your child happened to find a like-minded soul for a buddy in one of these classes. Mine was always the most highly-functioning. But figuring out the right behaviors to use in the lab with other auties si very different anyway from navigating the real world with the rest of the human population!

So keep doing what you are doing and make his childhood happy. Hearing on this thread how many people had miserable childhoods reminds me why I decided to homeschool my son.

I don't like to think of him as a diagnosis. He is my son. He is just fine the way he is.

146 posted on 04/30/2004 3:38:46 PM PDT by Yaelle
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To: sarasota
My son has suffered from severe depression, and has had to have several medical interventions.
147 posted on 04/30/2004 3:40:26 PM PDT by Travis McGee (----- -----)
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To: RSmithOpt; tiamat
Thanks! Something you can appreciate is that while Brendan suffers the worst with AS, the entire family is often "collateral damage."
148 posted on 04/30/2004 3:42:04 PM PDT by Travis McGee (----- -----)
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To: tiamat
Interestingly, 12yo Brendan draws like an 8yo (stick figures are about it) but he has perfect pitch, and can work out a song note by note on the piano or singing, after hearing it a few times. He's in a church youth choral group and really enjoys it. He reads sheet music like the ABCs. Math: easy. English composition: almost impossible.
149 posted on 04/30/2004 3:44:49 PM PDT by Travis McGee (----- -----)
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To: Yaelle
After trying many combinations of meds, and changing schools, Brendan is on a more even keel now. But we're still always walking on eggshells, because he can still "flip the switch" and go into out of control meltdowns. But it's better than the pure hell it has been.
150 posted on 04/30/2004 3:49:23 PM PDT by Travis McGee (----- -----)
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To: RSmithOpt
GBU and your brother trucker!
151 posted on 04/30/2004 3:52:24 PM PDT by Travis McGee (----- -----)
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To: Godebert
Lighten up Travis. It was just a lame joke. You take yourselves too seriously. Plenty of folks deal with much worse than what you have to go through so excuse me if I'm not impressed with your melodramatic whinning.

Okay, let me tell a little joke to lighten up the atmosphere.

You're a sick cruel sadistic stupid ignorant SOB. Go walk in traffic. Have a rat poison cocktail.

Hahaha! Ain't that funny! Gee, are we all laughing now?

152 posted on 04/30/2004 3:56:18 PM PDT by Travis McGee (----- -----)
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To: neverdem
Tomorrow's headline today:

Aspen ASPCA Aspies Asperse Asparagus!

153 posted on 04/30/2004 3:57:25 PM PDT by Revolting cat! ("In the end, nothing explains anything!")
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To: Yaelle
That's just it --- he has the symptoms but he has no real problem and by age 14 now can handle the crowd situation even if there actually might have been a neurological response he couldn't control at age 8 or 10 --- and I do think some of his stranger responses were neurological but not serious because they were partly due to an immature nervous system. Some of it was maturity but some was just letting him be --- at family reunions and gatherings he would stay at the edge --- not really interacting with cousins but able to join in on activities like hiking and exploring even though he's just as happy to do that alone. I guess if was desperate for friends or unhappy I'd be worried. Even the teachers would say it is just that his mind is at some different level --- he doesn't relate to the others because they don't share his obsessions but I think as he gets older he might meet others like himself if he gets into the right field of work and then I would expect he'll socialize somewhat or have friends. Or else he'll do what he's doing now --- limiting his social life to within the family and animal pets. He saw Seabiscuit and so is trying to communicate with horses like the old horse trainer and has now trained his horse to follow him around with no lead rope or halter. To me that is being social but just in a somewhat different way.

I actually think those who fit in with the crowd easily often have the more serious problems because they're steered too much by what others think. They may be popular and seem very normal because they have so many friends but from what I see of all the piercings and tattoes, teen drinking and drugging, I'd be more worried about a crowd pleaser than a loner.

154 posted on 04/30/2004 4:00:52 PM PDT by FITZ
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To: Travis McGee
I'm impressed. The death sentence for calling someone a "dork"? That's nice, but unlike you...I won't go cry to mommy like you did earlier. What a Mary.
155 posted on 04/30/2004 4:04:26 PM PDT by Godebert
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To: Travis McGee
I guess, from all of these posts, you have to go through this type of situation with a child or relative to appreciate the seriousness. Some people sit up on their ivory towers, and dismiss mental illnesses as a sign of weakness. I feel sorry for those people. We all should.

Some lines you don't cross. Do we make jokes about heart disease? Cancer? No, not unless you are one sick person.

Rush made an error in judgement when he made light of this illness. Politically, I agree with almost everything he has to say. But to coin an old phrase, point a finger at a person, and you've got three pointing back at yourself. You don't get hooked on pain meds without having mental health issues.

My heart goes out to all on here who have children afflicted with this illness. Because that's what it is...AN ILLNESS.

156 posted on 04/30/2004 4:09:26 PM PDT by LisaMalia (In Memory of Sgt. James W."Billy" Lunsford..KIA 11-29-69 Binh Dinh S. Vietnam)
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To: LisaMalia
I missed the Rush show --- what did he actually say? Was he making fun of the actual real diagnosis of real debilitating autism --- the kind that can get you in a mental institution or severely limits you're ability to succeed, earn a living, be happy? Or the diagnosis if autism that is sometimes being passed out like ADHD where normal kids are getting drugged up because their parents were convinced by schools that the kid needed drugs?
157 posted on 04/30/2004 4:15:11 PM PDT by FITZ
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To: RSmithOpt
LOL - good for you!!

I'm pretty inexperienced at gambling, so I pretty much babysit the slots, and play Let it Ride if I have a little extra to play with.

Craps pays well, but there's a lot of risk involved. I'm a ninny when it comes to risk (money risk anyways). So I'm cool with Blackjack and Let it Ride, and the slots.

Coolest Casino I've been to - Beau Rivage in Biloxi. Gorgeous place, and I had a lot of luck there. It's owned by the same folks that own the Bellagio in Vegas.

Worst Casino I've been to - Harrah's in Cherokee, NC Totally sucked arse. No live table games, and only video slot machines. If I wanted to play computer games, I'd stay home. LOL.

158 posted on 04/30/2004 4:20:27 PM PDT by PurVirgo (Never fight with a pig. You only get dirty, and the pig loves it!!)
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To: Southflanknorthpawsis
Rush is routinely cruel.

Maybe it's the drugs talking.
159 posted on 04/30/2004 4:22:35 PM PDT by Palladin (Proud to be a FReeper!)
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To: Palladin
LOL - no you didn't go there!!!!

Sad part is, I don't know if you're serious or joking!!!

160 posted on 04/30/2004 4:36:43 PM PDT by PurVirgo (Never fight with a pig. You only get dirty, and the pig loves it!!)
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