Aspies For Freedom

*sigh*

So many disturbing things in this article... Anyone here from Massachusetts?

BICKERING WELL WITH OTHERS
Asperger’s advocacy groups just can’t get along
By JULIA REISCHEL
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Two different Massachusetts groups that want to raise awareness about Asperger's syndrome, a disorder characterized by chronic social awkwardness, can't seem to bring themselves to play nice and promote their common cause. Instead, they're backing two different bills, promoted by two different legislators, that would do almost exactly the same thing.

"What we really want to do is help you out here," says state Rep. Matthew Patrick, the sponsor of one of the bills. "The acrimony was much more between the groups than it was between [state Rep. Barbara L'Italien] and I. I think I even talked to Barbara about it. We just decided to go ahead with our bills and support both of them, and whichever one comes out, either one would be good."

Patrick's bill, HB2208, was drafted by a group called Families of Adults Afflicted by Asperger's Syndrome (FAAAS). It would enact a "public education program" about adults with the disorder. The other bill, MB3838, was sponsored by L'Italien and was written by the Asperger's Association of New England (AANE).  http://www.aane.org/ It would establish a pilot program that would "provide services which lead to paid, customized, sustainable employment" for adults with Asperger's. Ostensibly, the two bills have the same aim: increased awareness of and funding for adults with Asperger's syndrome, a neurological disease that's thought to be a milder form of autism. The need is real: Despite its lifelong symptoms of social discomfort and inappropriate behavior, the syndrome is only recognized as a childhood disease in the United States, with few resources dedicated to adults with the condition.

"It's about aging," Patrick says. "It's becoming more and more difficult for [parents] to take care of their kids, who are not kids at all. They're afraid for the future. And I'm afraid that it'll just be another addition to our homeless population."

But despite the efforts of the sponsoring legislators, the two groups behind the bills have refused to cooperate, or even appear in the same hearings to support each other. At a hearing for one of the bills in March, there was a last-minute dispute over which group would testify, and FAAAS ended up staying at home. Two weeks ago, at a hearing for the FAAAS-sponsored bill, representatives of AANE were conspicuously absent.

"There is a philosophical difference between the two groups, which is a shame," says Harriet Simmons, a Wellesley therapist who serves on the board of FAAAS. "AANE is pretty much for individuals with Asperger's, and FAAAS is supporting families around the issue with Asperger's."

The rift between the two groups stems from fundamentally different opinions of Asperger's syndrome, which FAAAS views as decidedly negative. Karen Rodman, the founder and president of FAAAS, is a veteran of 43 years of marriage to a husband with Asperger's, who was only diagnosed relatively recently.

"After a whole marriage of trying to figure out what I was doing wrong, I finally found out that it wasn't me," she says. "All the doctors I went to said 'You're hypersensitive and high-strung. There's nothing wrong with your husband.' Then he was diagnosed, and they found out that he had full-body tics. He had never slept for 69 years."

John Henry Galas, an adult with Asperger's, was the only person with the disorder to testify on behalf of FAAAS at the most recent hearing. He echoed the group's message that Asperger's hurts family members.

"It takes me a long time to comprehend orders," he said. "You'd have to draw a picture for me to understand ... Let me tell you right now, I'm proud to live in the Commonwealth of Massachusetts, and I would love to live here for the rest of my life. But in order to do that, I need support from you. I have traveled this long way without much help; please don't make me beg my family to take me the rest of the way."

Groups made up primarily of members with Asperger's, like AANE, take umbrage at this kind of rhetoric. While officials at AANE weren't available for comment, it's clear that many self-proclaimed "Aspies" view negative beliefs about Asperger's as bigotry, and FAAAS as one of the worst offenders.

"Mention FAAAS to most Aspies, and you'll be able to hear the silence that precedes a thunderstorm," writes Barbara Jacobs in her book, Loving Mr. Spock, a treatise on understanding lovers with Asperger's. "They have taken great exception to FAAAS. One of the reasons is the title: Families of Adults Afflicted by Asperger's Syndrome. It's the word 'afflicted' that they vigorously object to."

Though infighting between factions of special interest groups is common on Beacon Hill, the schism in the Asperger's community feels particularly inevitable. "You've got to remember: some of these people in these organizations have Asperger's," Patrick says. "So it's just not easy for them to get it together. I think it would actually be good if they came to grips with that."

Holy, no.

Crap, definitely.

But AANE sems to be on the right track in some of the stuff on their webpage.  It's good they're providing an alternative to FAAAS, which sounds just incredibly loathsome.

I agree with Max - ridiculous. FAAAS need to pull their heads in because the negativity they are talking about is being contributed to by their own attitude. Not to say that what they say is fundamentally wrong - but to put the negatives at the forefront and in the process hide the positives is unacceptable conduct. There has to be a balance with the positives getting priority.

Any over harping on the negatives won't help us at all.

Is it horrible? I figured it was. I didn't want to look or to link to it, I know it would just piss me off. I imagine it's like one of those "cure gays" sites, all about the tragedy of the non-normal. (Oh, the tyranny of normalcy...)

Go home and cry, FAAAS.  Need a ride?  Here's your transportation...



I can't stand FAAAS.  I've been to their depressing website a few times.  They give examples of their family lives, but frankly I think those are extreme examples, not typical.  They sound like a bunch of whiny brats who haven't yet realized it's time to grow up and get over it already.  No family is perfect, okay!?

I hope that sometime within the next few years, AFF will be out there lobbying.

Guardian, is this a quote from their webage? It's like saying "Asperger's: No Aspies Allowed"

Incredible.

For any group there are stereotypes that are simply ignorant (all the gays love Madonna) and there are stereotypes that are evil and destructive (all the gays are child molesters)

Of all the Aspie stereotypes, the most evil is "Aspies don't love." Often it's accompanied by "... the way we do."

The "they don't love the way WE love" shit was used to justify selling children away from their mothers in the days of slavery and it's used against gay marriage. It's the most abominable lie that an oppressor group tells about the oppressed group.

Yeah, that's actually the more common way it's said about AS people. Even in some of those F*ed up relationship books it takes the perspective that the NT partner should expect "real" love because AS people just "can't" feel blah bla blah. Gay people don't because it's a chosen perversion, Aspies can't because they're tragically defective. The Bigot's Lexicon

FAAAS was one of the first websites I looked up after finding out I have autism but I found it next to useless because it was all about the families saying how difficult it is to have an aspie in their midst.

I also think the 2nd Bill, the one that AANE supports, is the better by far because it offers practical assistance to aspies who wish to find a job.

Just on that (jobs) - I think that while that's important, there also needs to be support for those who can't work for whatever the reason.

Oh yes, I wasn't trying to suggest that everyone with AS should be pushed into getting jobs. Perish that thought forever! I think aspies shouldn't be forced onto JobSearch when DSP would be more appropriate.

I never said you suggested that, Tenacious. Don't stress!

I really think the fixation of NT spouses upon their partners' AS diagnosis misses the point, which is: they married someone with whom they are incompatible.  Some of their friends with NT spouses may be just as unhappy, for very different reasons.  These Aspie spouses being blamed for so much misery 1.) might be just as unhappy themselves, trying to cope with the emotional demands of their NT partners, and 2.) might have made wonderful partners for someone else.  Maybe both partners are good people; they just don't belong together.

Aww thank you!  *shares the credit with her psychology books*  

Precisely: or maybe they needed to do some pre-marriage counselling so that some of the differences could have come out early enough to be worked through.