ESPN Surfing Wrong About Asperger's and Empathy

This just in from Ari Ne'eman, President of ASAN, as an example of how to address negative Aspie press:

From: Ari Ne'eman
Date: Mon, Aug 24, 2009 at 2:53 PM
Subject: ESPN Surfing Gets it wrong about Asperger's and Empathy
To: espnsurfing@...


Dear ESPN Surfing:

In a recent article on the ESPN Surfing Blog, contributor Jon Coen applauded surfer Clay Marzo's recent win in the Quiksilver Pro Puerto Escondido, adding the following:

"What may have been most interesting is that he was adamant about dedicating his victory to Honolua Bay artist/surfer Ron Cassidy who died at Puerto last year. It's striking because if there was one thing we learned about Marzo in "JAW" and the string of press he got following it, was that his mind doesn't work socially the way ours works. Sure, the win is remarkable, but does this point to some growth in his character as well? Is he developing a sense of empathy uncommon in Asperger's patients?"

While we join Mr. Coen in applauding Clay Marzo's win, we'd like to express concern about the characterization of empathy as uncommon amongst adults and youth diagnosed with Asperger's Syndrome. Autistic people face difficulty perceiving and expressing neurotypical social communication. This communication gap is often misunderstood as a lack of empathy on the part of Autistic people. It is understandable why Mr. Coen repeated this common stereotype, reflecting an outdated understanding of the autism spectrum still frequently cited in media and the medical literature. It has been only relatively recently that the medical community has begun to catch up to what Autistic adults already know - that there is a world of difference between the lack of empathy ascribed to us and the difficulty in communication that we actually experience (Rogers, Dziobek, Hassenstab, Wolf & Convit). However, it is nonetheless important that the record be corrected. This stereotype and similar mischaracterizations of the nature of the autism spectrum is the basis for much of the fear, stigma and prejudice faced by Autistic adults in society today. We encourage ESPN Surfing to correct the record by posting this letter and an accurate explanation of social communication issues faced by Autistic adults on its website.

Regards,
Ari Ne'eman
President
The Autistic Self Advocacy Network
http://www.autisticadvocacy.org
732.763.5530

Fat, Dumb, and Happy

The phrase, "Fat, Dumb, and Happy" is stuck in my mind because I've been wondering what life would be like if I never realized I was "different."

There was a time, back in high school, when I was blissfully unaware of my differences. Sure, I didn't have a lot of friends, but that's because I was focused on grades to get free college ride. And I was a nerd. Lack of friendship was expected. But when I went to college, my eyes were opened. I saw that others -even nerds- experienced a depth in relationships I had never known. I saw that people treat me worse when I presented myself as "me," and learned how to project a confidence I don't really feel. I lost about 60 pounds, became part of the "normal weight club" and discovered just how horribly others thought of "fatties" LIKE ME. Even now I can hardly purchase groceries without worrying over whether people are judging me for what I throw in the basket, for I've regained a few of those pounds.

I know I should be thankful. These revelations have allowed me to ascend to a higher professional status than I deserve. To make more money than I deserve. To be more than the Goodwill Janitor prescribed by my psych eval no offense to my Goodwill brethren intended- I'm just saying I should be where you are, but praise God, am able to hold a better job. I also have more social interaction, participate in networking events, and are routinely invited to events with coworkers (though none are as fulfilling as my friendships with a handful of other intense Aspies).

But on the other hand, my days are shadowed by a growing dislike of my natural self and seething anger of the injustice of having to conform. Before I knew I was different, I was happy. Happy with who I was and what I could accomplish.

What if I still believed that everyone else out there processes information like I do, or that they all have the same level of social interaction as I do. To not know how they belittle me when my weight creeps up. To not know how they make fun of my strange behaviors (before I learned to control and hide them). I wonder what it would be like to go back to not caring what anyone thinks of me. And one day, when I secure my retirement, and buy my house in the middle of nowhere, I intend to do just that. But it won't be the same for me.

It takes every ounce of energy I have to put up the proper front during the day, leaving me collapsed in a heap at the end of the day, with little time or energy for the things that truly give me joy. Why do I continue? Because I want to keep my job til I can retire, and I want people to take good care of my son while he's under my care. Those two goals inflict a requirement to get along with others, play "the game," be mindful of what they think about my appearance, behavior, life, etc. I tell myself it will be worth it 10 years from now when I have a "check for life" coming in and my son is a confident, productive member of society. I also tell myself that one day I will accept myself for who I am, embrace the good and the bad, and stop holding myself to someone else's standards of who I should be.

But until then, I'll sludge along and try not to look back wistfully at the days when I was "Fat, Dumb, and Happy."

How To Lose A Friendship Before It Starts

Let me share with you an excerpt from my list of “No-Nos,” things I used to do that kept me from making friends with "quality" people. I've come a long way in my behavior over the last 10-12 years, so I don't mind sharing. Maybe you'll recognize yourself or someone you know in some parts of this list.

First, I'd like to mention we need to be careful of calling people "friends." I often used to consider people my friends then they were actually just being polite. Because I would never invite someone to join me if I didn't want them there, it's hard to for me to remember that people often act like they want us around when they don't. They're just being polite. We're supposed to pick up on the subtle hints and conveniently come up with other plans. Subtle hints are hard for most Aspies to catch, but I'm getting better and I'm sure you will too.

We have to remember that people won't generally tell us if these things are a problem. They will just avoid us in public and conveniently forget about us when doing things as a group, even if they like our personality and have no problem hanging out with us one-on-one in private. It is more important to MOST people to fit in than to nurture our friendship if our friendship threatens their ability to fit in with the group.

• Dominating the conversation, turning every conversation to be something about ourselves or our special interest. Even when talking about "them" somehow our comments always insert *us* and our accomplishments. We think we are building a bridge by sharing what we have in common. Others take it as bragging, narcissism, or dominating the conversation. I still have to watch out for this.
  
• Digging in eyes, ears, scratching scalp, or picking nails in public. Especially for women- you are not supposed to touch your face a lot, unless it is with a napkin or to push up glasses, etc. Good thing my mom taught me not to pick my nose, or I probably would have done that too.
  
• Poor grooming- look disheveled, strong body scent (according to their standards), hair not done (according to their standards), visible dirt on body, clothes rumpled or dirty (remember, they don't have tactile issues and don't understand why we always want to wear that same soft outfit all the time), also, if the group is fashionable (clothing, style) and you're not- the members of the group are less likely to invite you along, even if they like hanging around with you one-on-one (in private)
  
• Talking too loud in public
  
• Lack of "discretion," talking about things that are not "socially acceptable" As an example: in the airport one day, an aspie friend and I were talking about her upbringing. She explained childhood physical and sexual abuse in explicit detail, and was quite loud and agitated. I noticed that other passengers were getting uncomfortable with our conversation and directed it to something less distressing for those who overheard us. I consider this a victory, because 10 years ago I wouldn't have noticed their discomfort, and even if I had, I would have thought tough- that’s their problem and been happy to shake them out of their idyllic fake reality! I wouldn't have realized that extreme abuse isn't the kind of thing you talk about loudly in the airport waiting room.
  
• Always dropping stuff because of carrying too much or too unorganized; always fumbling to find keys wallet, etc
  
• Always tripping, falling, stumbling, etc. This is tough to overcome because many Aspies have spatial/clumsiness problems.
  
• Always causing "trouble" by too many special requests at the restaurant, or by asking too many questions when someone "hooks up" your group with a special deal (I always did this, because I was scared I was getting conned or they were going to charge me later)
  
• Being too critical of others (because we're so perfect, this is easy to do, LOL)
  
• Acting "weird," which is admittedly hard to quantify but basically most people don't like to stand out. And they don't want to be in a group with someone who sticks out like a sore thumb. Sometimes I have to be "true to myself" and stand out, but I have to accept the consequence that the people I'm with will be less likely to invite me along next time.

Like I said, most NTs won’t come out and tell you these things. And a lot of Aspies won’t either, because in most of the Aspie groups I’ve attended, much of the above doesn’t bother anyone. I guess we all carry too much stuff, and we’re all tripping and bumping into things. Or stimming in public. Or looking a little rumpled. I learned this stuff through trial and error and by overhearing what people say about me and others like me. BTW: If this looks familiar to you, it’s because I pulled it from another post I made to an anonymous aspie group I frequent. Hope it is of some use to you.

How to Handle "Typical" Unreliable People

I wrote this response to an Anonymous commenter who asked how to deal with the fact that most "typical" people don't value being reliable and following through on their word. You can see her comment on my "If Your Friends are Just Using You, They're Not Really Friends" post, but Blogger wouldn't accept the html link for the books, so here it is as a post.

Thank you for your comment. Let me recommend two books:

That's Not What I Meant!


You Just Don't Understand: Women and Men in Conversation


I don't know why most people don't feel the need to be honest and reliable.

I DO know, however, that it is so "normal" to be dishonest, that when I answered a psychological eval question "I never lie" with "true of me all the time" the person who interpreted the test told me it most likely indicated I am putting up a front. I asked why that would be- I really DON'T lie. He said that everyone (of normal psychology) lies and that if one says they don't lie, they are either of abnormal neurology (such as autism) or they are trying to pretend they never lie so that they will look good to others (thus, they are putting up a front). Very weird, IMHO.

Personally, here is the way I deal with it:

1. I do not "depend" on "typical" people. I make plans but typically have a backup in mind "just in case." I enjoy their company, but don't rely on it.

2. I keep in mind that "typical" people often say they want to do something, go somewhere, make XYZ agreement, when they don't. In many cases, they are making subtle hints that we (if we were typical) would pick up on and realize that they weren't going to follow through.

3. I really don't "plan" too many things anymore, because "typical" people are too fickle, and they don't feel the same sense of obligation I do about things. If I say I'm coming, then I'm coming no matter what it takes. If I say I'll do XYZ for you, short of death and dismemberment, I'll do it. Most people aren't like that. They'll go with the best thing going, and when something better comes along, they'll forget they made plans with me.

4. If I do "plan" something, it's a common area event- by that I mean, it's something like going to a museum or a race, where I can still enjoy myself whether everyone comes or I end up by myself. My "social calender" isn't as full as it used to look, but my interactions are much more enjoyable.

5. Finally, and this has been the HARDEST part of my walk, has been realizing that people just don't like being around me too long. I'm too honest, live too clean a lifestyle, and I don't watch a whole lot of junk. In other works, I'm pretty boring, and my lifestyle condemns others (especially other Christians). Even though I'm learning to season my words with grace, and I'm getting better at social interaction, I've accepted the fact that until I make people feel good about themselves when they're around me, and until I squelch any embarrassing habits I have, I'm going to be alone more than I want. The good news is, I don't want to be alone forever, and that has inspired me to change over the past few years. I'm still rough around the edges, but ask those who have known me- they'll tell you I've come a loooooong way.

Social Graces, or Lack Therof

My friends and I have been discussing how for us learning to be sociable is like cataloging experiences. We learn through discovery (whether ours or someone else's) and then catalog the right and wrong responses as we discover them. When the next situation comes up, we run through our catalogs and find the best matching response to throw out. For example, asking how are you (something I hate because usually no one really wants to know):

She asked "How are you today?"
Do I know her- > No. So the answer is "Fine," even though I'm really bummed b/c it looks like my weekend plans are falling through.

She asked "How are you today?"
Do I know her- > Yes. So the answer is "Doin' Alright," even though I'm really bummed b/c it looks like my weekend plans are falling through.
She's started rambling about her day -> Ok. She's not really interested in me right now. Let her talk. Don't mention my bad news.

She asked "How are you today?"
Do I know her- > Yes. So the answer is "Doin' Alright," even though I'm really bummed b/c it looks like my weekend plans are falling through.
She now asks, "How are your plans for the weekend going?" I say, "progressing" (and wonder if she is really interested or just being polite).
She asks, really, what are you trying to do? She asked the question, so I can tell her, but just a little, to guage her interest.

She asked "How are you today?"
Do I know her- > Yes. So the answer is "Doin' Alright," even though I'm really bummed b/c it looks like my weekend plans are falling through.
She now asks, "How are your plans for the weekend going?" I say, "progressing" (and wonder if she is really interested or just being polite).
Silence. Oh, yeah. This is where I'm supposed to ask her how her weekend is going, because in reality she's not very concerned about my weekend, she only asked me about it so she could open the door to telling me about her great new plans. So, I say, "What about you? Got plans?"

Well, I got another lesson in social graces today: The organizer of my running group offered me a free shirt (a standard cotton T-Shirt). I already have a ton of cotton shirts (some purchased through this running group) and T-Shirts don't flatter my figure.

So I said, "oh, I don't need another cotton shirt. But thanks for thinking of me." My thought was: he's offering me this shirt, but he normally sells them and since I don't need or want it why take it out of stock? He can either sell it or give it to someone who can use it. That's what I would want him to do if it were the other way around (I would be angry if you told me you wanted something and I gave it to you but later found it on the Goodwill racks).

He looked at me funny and then walked away. The girl I was with shook her heed and said, "You should have took the shirt. The right answer was, 'Thank You' and you take the shirt. You could have given it to your sister or something." I explained to her that I hate waste (which my taking the shirt would be) but she explained all the more that the right answer was to smile sweetly and take the shirt that he was obviously (to her, not to me) trying to get rid of.

What's sad is, I know she's right NT-wise, but I still hate the thought of wasting an item I don't need just to be polite. It never occurred to me I was hurting his feelings. I thought I was doing him a favor.

So, the first lesson from today is: sometimes it's better to be polite than to be "right."

The second lesson from todayis : sometimes as Aspies, we really CAN'T do others as we'd have them do unto us. We have to do unto them as THEY'D have us do.

And the final lesson from today is: When someone offers you something, the polite thing to do is take it, even if you don't want it.
Unless, of course, your friend is an Aspie who hates waste ;-)

Castration Drug For Autism?

I am ALL for anything that will improve the quality of life of our autistic children, and I know that sometimes this means using drastic medication, but this makes me SO mad! How can someone get away with marketing this treatment when proper trials and such haven't been done? It would be different if he were giving it to adults (who can make that decision) but to children???

The article is VERY long, so I've posted only excerpts. You can read the whole thing here:

http://www.chicagotribune.com/health/chi-autism-lupron-may21,0,242705.story

'Miracle drug' called junk science: Powerful castration drug pushed for autistic children, but medical experts denounce unproven claims, By Trine Tsouderos | Tribune reporter May 21, 2009

Desperate to help their autistic children, hundreds of parents nationwide are turning to an unproven and potentially damaging treatment: multiple high doses of a drug sometimes used to chemically castrate sex offenders.

The therapy is based on a theory, unsupported by mainstream medicine, that autism is caused by a harmful link between mercury and testosterone. Children with autism have too much of the hormone, according to the theory, and a drug called Lupron can fix that.

"Lupron is the miracle drug," Dr. Mark Geier of Maryland said after meeting with an autistic patient in suburban Chicago.

Geier and his son developed the "Lupron protocol" for autism and are marketing it across the country, opening clinics in states from Washington to New Jersey. In the Chicago area, the treatment is available through Dr. Mayer Eisenstein, a family practitioner in Rolling Meadows.

But experts say the idea that Lupron can work miracles for children with autism is not grounded in scientific evidence.

Four of the world's top pediatric endocrinologists told the Tribune that the Lupron protocol is baseless, supported only by junk science. More than two dozen prominent endocrinologists dismissed the treatment earlier this year in a paper published online by the journal Pediatrics.

Simon Baron-Cohen, a professor of developmental psychopathology at the University of Cambridge in England and director of the Autism Research Center in Cambridge, said it is irresponsible to treat autistic children with Lupron.

"The idea of using it with vulnerable children with autism, who do not have a life-threatening disease and pose no danger to anyone, without a careful trial to determine the unwanted side effects or indeed any benefits, fills me with horror," he said.

Experts in childhood hormones warn that Lupron can disrupt normal development, interfering with natural puberty and potentially putting children's heart and bones at risk. The treatment also means subjecting children to daily injections, including painful shots deep into muscle every other week.

----

The Geiers say they have probably treated 300 autistic children and a handful of adults with Lupron, and an additional 200 people are being tested.

In February, when the Geiers visited his office, Eisenstein was effusively enthusiastic about Lupron. "It is awesome, just awesome," he told doctors in his practice after the Geiers spoke about their therapy.

But three days after his May interview with the Tribune, Eisenstein called to say he was having second thoughts about the autism clinic, citing issues with insurance companies and less-than-spectacular results.

"It's highly unlikely that we're going to be part of the autism program much longer," Eisenstein said. "I'm not pleased enough with it. It's not where I want to put my energy."

Several parents whose children are on Lupron told the Tribune that it works, saying their children are better-behaved and show cognitive improvement. "It was an obvious, undeniable result," said Julie Duffield of Carpentersville, whose 11-year-old son has autism. "I wish you could see what he was like before."

Experts said such beliefs are common among parents who try alternative autism treatments. It's easy, they say, to attribute normal developmental leaps to whatever treatment is being tried at the time.

"It has become a cottage industry of false hope, and false hope is no gift to parents," said Autism Science Foundation President Alison Singer, whose daughter has autism. "A lot of these therapies have no science behind them. You are using your child as a guinea pig."

---

The U.S. Food and Drug Administration has approved Lupron to treat precocious puberty, an extremely rare disorder that involves finding signs of puberty in very young girls and boys.

Lupron is also used to treat prostate cancer in men, to treat endometriosis in women, and to chemically castrate sex offenders.

---

By lowering testosterone, the Geiers said, the drug eliminates unwanted testosterone-related behaviors, such as aggression and masturbation. They recommend starting kids on Lupron as young as possible and say some may need the drug through the age of puberty and into adulthood.

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Specialists in autism, hormones and pharmacology who are familiar with the Geiers' protocol said it cannot work as they suggest.

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Looking at the tests, Kaplowitz said he asks himself: "Is Dr. Geier just misinformed and he hasn't studied endocrinology, or is he trying to mislead?"

Mark Geier responded that these are "opinions by people who don't know what they are talking about," saying the pediatric endocrinologists interviewed by the Tribune don't treat autistic children and have not tried the Lupron treatment. David Geier said prominent scientists support their work and gave as an example Baron-Cohen, the autism expert who told the Tribune that the Geiers' Lupron treatment filled him with horror.

---

Neither Eisenstein nor the Geiers dispute that what they are doing amounts to chemical castration.

Speaking about one teen he put on the drug, Mark Geier said: "I wasn't worried about whether he would have children when he is 25 years old. If you want to call it a nasty name, call it chemical castration. If you want to call it something nice, say you are lowering testosterone."

Eisenstein said the choices to treat severely autistic children are few --psychiatric drugs that will turn them into "a zombie," or Lupron.

"Will they be chemically castrated?" he said. "Yeah, it's a possibility."

---

The effects of children taking Lupron in high doses indefinitely are unknown, but endocrinologists said the drug would deprive takers of puberty's beneficial effects.

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ttsouderos@tribune.com Tribune reporters Steve Mills, Patricia Callahan and Tim Jones contributed to this report.

75 of Us

I am enjoying this new blog thing, but was having trouble finding other autism blogs. I did some searches on autism, and searched for people on blogger whose profiles reflected an interest in autism. But most of those were parents. I was looking for Aspies or Auties themselves. Not their NT parents. Well, I searched on "Neurodiversity" and guess what?

There are 75 bloggers (on blogger) whose profiles include the word "Neurodiversity" in their interests. I love it when the numbers work out to "even groupings" of 5 like that. ;-)

Unfortunately, I've only visited 10 so far, and most have blogspot (not blogger), so I'm at a loss as to how to get their blogs in my "blogs I follow" list so I can easily see all the recent posts. No matter. I am sure I will enjoy working my way down the list as time progresses.

Just thought you'd like to know, in case you, too, are having trouble locating blogs writen by "us."