Aspies For Freedom

This is the most widely read national newspaper in the US -- and there is some F***ED UP crap in here -- especially from "research scientist" Katherine Tsatsanis.

The paper needs to get some letters about this, particularly from diagnosed Asoies who are in relationships and/or have children...

A long shadow is lifted on Asperger's in adults
By Suzanne Leigh, Special for USA TODAY

Ten years ago, Kathy Marshack, a psychologist in Vancouver, Wash., was unfamiliar with Asperger's syndrome in adults.

Asperger's is a condition on the spectrum of autism disorders that most people associate with children and teens, but Marshack has about 15 patients who are either adults with Asperger's or are the spouses or grown children of them.

Marshack, who says her late mother had Asperger's and her adopted daughter has it, believes the condition is widely undiagnosed. In many cases, it doesn't come to light until a spouse or adult child seeks therapy for depression or poor self-esteem that results from the coldness and egocentricity Asperger's adults demonstrate in relationships, she says.

The number of Asperger's adults, like the diagnosis, is hard to pin down. Anecdotal growth in their ranks and a burgeoning online "Aspie" adult subculture that includes dating sites, advocacy groups and chat rooms raises the question: Are we starting to discover generations who escaped diagnosis? The condition officially wasn't recognized until 1994, which leads people such as Marshack to believe doctors are playing catch-up with adult diagnoses.

Because some Asperger's adults are spouses and parents and have enduring careers, others suggest that the diagnostic criteria are being interpreted too loosely.

"Almost by definition, an Asperger's person would not form an intimate relationship, get married and have children," says research scientist Katherine Tsatsanis of the Yale Developmental Disabilities Clinic. "They don't form connections. The desire, the drive and the social knowledge is lacking."

An explanation for behavior

What is not disputed is the testimony of those who say their diagnosis helps explain their lives.

When Liane Holliday Willey was diagnosed with Asperger's at 40, she felt she had been offered a key that would "unlock the mysteries that were me."

The Rockford, Mich., married mother of three wrote of her suspicions that she had the disorder in her memoir, Pretending to be Normal, published in 1999. In it she described an "overwhelming childhood desire to be away from my peers," preferring pretend tea parties in which "the fun came from setting up and arranging things."

The criteria for Asperger's, according to the Diagnostic and Statistical Manual of Mental Disorders, the clinicians' diagnostic handbook, are "qualitative impairments in social interaction," which may include poor eye-to-eye gaze, failure to develop relationships and lack of "emotional reciprocity." The syndrome also is marked by "restricted repetitive and stereotyped" behavior, such as inflexible adherence to routine, hand flapping or twisting and an abnormal preoccupation with certain interests.

For William Loughman of Berkeley, Calif., a retired director of a hospital cytogenetics lab and grandfather of six, reading about Asperger's led to an epiphany when his conviction that he had the condition was confirmed by a psychologist three years ago. Loughman, 74, says that like many people with Asperger's, he has difficulty making eye contact and tends to rock back and forth ("stimming" in Asperger's parlance).

He believes Asperger's explains why he flourished in the highly structured environment of the U.S. Army and partially explains why his first wife of 10 years divorced him. (His second marriage, which has lasted 40 years, has weathered decades of turmoil but is now calm, he reports.)

Disparities in diagnoses

Like other conditions on the autism spectrum, Asperger's is believed to be caused primarily by errant genes, and it is not typically associated with low IQ. Although there's no consensus on prevalence, a study in May's Journal of the American Academy of Child and Adolescent Psychiatry pins it at 1 in 400 among 8-year-olds, more often in boys than girls.

Though professionals use the same diagnostic criteria, interpretations make for wide disparities in diagnosis. Ami Klin, head of the Yale Developmental Disabilities Clinic, says some people may have family members with autism-spectrum disorders and exhibit features of Asperger's, such as "social deficits and a great deal of rigidities," but these traits are not tantamount to the diagnosable condition.

Forming close friendships and dating run counter to Asperger's adults' goals, colleague Tsatsanis says; Klin says he has never known a parent with Asperger's.

Bryna Siegel, director of the Autism Clinic at the University of California-San Francisco, concurs that an Asperger's parent would be rare, and she knows of just one short-lived marriage. Recently she does more "un-diagnosing" than diagnosing, she says.

But Marshack, whose self-published A Sliver in My Mind: Loving Those With Asperger Syndrome arrives this year, says experts who say Asperger's adults don't marry or have children either "have their heads stuck in the sand" or do not believe many have learned to compensate for their deficits.

Diagnosis can offer fresh hope to those who have been struggling, she says.

Holliday Willey says she fails to understand concern about overdiagnosis. "The idea that too many are being diagnosed — so what? I'd rather gather in more folks than leave one out."

And many who are not in relationships long to be. I was most concerned with Dr. Tsetsefly's statement "Forming close friendships and dating run counter to Asperger's adults' goals"

I just don't think that is nearly as universal as she declares.

And I'm concerned that they sought out what seems to be such an extreme point of view.

Just a loose thought. Aspie men seem to have problems about mating. Aspie women are by tradition the courted side, the more passive in the first stages of the mating process. By that I mean it is easier for Aspie women to get into marriage than their male counterparts. It's still a male dominant society so we'd be permeated with misogynistic crap and old eccentrics, together forming the paradigm we call the world. A world that changes in every second...

Oops Sorry! I just tried to be positive there at the end, ie the ever-changing world...

Not autistic enough, I guess, to be part of the Asperger "community."  You should probably go sit in a dark corner by yourself.

I've been looking at match.com's guarantee.  I figure, with my unique combination of atheism, libertarianism, and unemployability, I'm a shoo-in for that year at half-price.

This essential claim -- "They can't form relationships and feel love the way we can" -- has been made historically against other "different/inferior" groups in order to demonize and marginalize them.

It was what slave owners said about black people -- and that was an excuse for tearing their families apart and selling their children.

It's what fundamentalists and right-wing politicians say about gay and Lesbian people -- and that's an excuse for denying us equal relationship rights and pathologizing our orientation.

When you remove their capacity for love and caring and needing, it de-legitimizes the humanity of "them."

It's all a way of proclaiming "they [which is to say we] are not fully human"... and once that agenda is accepted, it doesn't really matter what they do to us. After all, it's not like they were doing it to a real human being.

http://www.autism.fm/


There is a disclamer about the USA today article. They said they were misquoted. I can't see how someone could be misquoted so badly thou.

Ah, but you see, we're disabled, so our opinions don't count, and we obviously couldn't do something as difficult as writing!

[/sarcasm]

I totally disagree, of course. That's a very dysfunctional and moribund philosophy. You don't have to live by it if you don't want to.

That possibly has to do with the kind of people who read USA Today as opposed to the kind of people who watch Oprah. (and post regularly on Oprah boards.) The latter is more into that kind of nonsense that would attract people to turn into touchy feelie curebies.

...Although, having said that, I did put a post on the Oprah board and remember getting two replies (possibly more -- although I never looked) and one of those was quite nicely not curebie.

(gotta wait 34 more seconds to post this so.... doo di doo di dum dum dum... that ought to be enough...)

I seldom laugh out loud, but you got me with that one

" It is dangerous enough to include oneself in an inferior social class (even if you realize the class is defined by popular culture, which can be a lie, but lie or not, it is your culture too, and you've lived in it all your life, pal)."

It takes considerable strength of character to stop letting "society" define you and instead to define yourself. It's both an individual process and a group (in your case Aspies) process. It's harder when there is no visible community (which is why sites like this are so invaluable.) But it starts here. The Aspie movement is where the gay movement was pre-Stonewall. That defining, watershed moment has not yet happened yet for Aspies, but it will, in some form.  It would be great if Al Gore won the presidency (again) and then came out as the Aspie I believe him to be. But one way or another, the time will come that an AS community will emerge.

As for individual , stop thinking of Aspies as "socially inferior" and stop thinking of that group membership as "dangerous." We live both in the predominant culture and outside of it. That's not always an easy duality to negotiate, but that's not a choice we have -- it's a fact, so stop lamenting it and fearing it.

I think that inside/outside position has been an enormous, treasured gift to me -- and, frankly, people who don't have it tend to bore me to death. But you have to look at it as a gift in order to see it as a gift. Your post makes it sound like a twelve pound tumor in the center of your face. If you see it that way, that is how you will present it to the world and you will guarantee that they see it as negatively as you do.

The health of your self-esteem and identity will NOT come from the predominant culture. It will not. It can't. That culture is neither able nor interested. If you expect them to come along and give you happiness, it will never happen.

Therapy recommendation: do yourself an enormous favor and go see "Hairspray." That girl has a lot to teach you.

Thank you so much for pointing this out! They didn't seem like imaginary quotes to me.

Clearly, Yale gota ***-load of outraged email and letters. They are back-pedaling madly.

  You have a link to the transcripts??