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 ;-)

Why Are People So MEAN About My Weight?

Yesterday I went into a burger joint. I was scared to death. It's been years since I've walked in this place, because my husband always did it for me. And it's not just walking in. When I'm in a town where people know me (and my car) I HATE going through drive-throughs too. I even hate buying "junk food" in the store. The anxiety is almost paralyzing.

Why?

Because people are so MEAN to me when I do!

I get disapproving stares. I get people look at what I'm buying, then at my figure and shake their heads. Occasionally I get some lady who will say something like, "you know that's not good for you?" or, "That's not for YOU is it?" I wonder if they're really wanting to say "what an ugly, sloppy fatty- you shouldn't eat that. You should duct tape your mouth shut and then maybe you'll lose some weight."

I hate how I feel when people look at me that way. I don't eat a lot of junk food. But I do like to treat myself after a good workout week. I've lost about 60 pounds over the last three years, and I'm really making an effort to keep the weight off. But even at Size 14, I still get the remarks:

Just last month, I was on a business trip and the hotel offered free dinner. I heaped a ton of pasta on my plate- intending to save some money by eating half and saving the rest for lunch. I step into the elevator with an older couple, and the wife proceeds to ask me, "Are you actually going to EAT all that??" I was angry that she would ask that (it's none of her business) but I was happy for once that I had the "right answer," and politely told her, "No I'm saving half for lunch tomorrow." Her response? "Yeah, right. You're going to eat it all." I was SO glad we reached her floor at that point. But SO stunned that she would say that to me. And even worse, upset at my inability to respond in a way that affirmed myself.

Another example:

I was about to end a month long series of three day religious fasts (one each week). I decided to add my favorite snacks to the celebration menu, and ran downstairs to the store to buy them. As I stood in the check out lane, the woman behind me asked, "You're not going to eat those, are you? Oh, of course you are. You're probably just going to have a few, right?" I looked at her and said, "Ma'am, I haven't eaten in three days, and I intend to eat the whole thing." I paid and left. But I wanted to cry.

So when I went to the burger joint, I tried hard not to look at anyone. I didn't want to see their disapproving stares, and I didn't want to deal with the shame of someone like me eating what was obviously not good for me. Why is it OK for them to eat it, but not me? All these feelings of anger came out, because I'm in good shape: run 8-12 miles every Saturday, can out kickbox, step, or power-pump most of the other people in the gym. But I'm bigger, so people can't look at me and tell I just ran a half-marathon with my friend last weekend. They can't tell the Dr is always impressed at how healthy I am at my checkups. All they see is somene a little larger than normal with low self esteem and for some reason they feel driven to attack.

Why do they DO this?
And how shoud I RESPOND?

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.

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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."

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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.

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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.

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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."

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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.

Finding "Safe People"

Today, while driving back, I heard a snippet of New Life Live, a Christian Counseling radio show, in which the host of the show told the caller how he slowly built new relationships. I didn't hear the caller's question, and not sure I understood him right but what he said blew my mind. Granted, it's not hard to blow my mind when it comes to relationships... but still... I thought I'd share his wisdom with you.

He told this caller (my words, not his) not to share too much information too soon, and that he (the host) often tests new friends over time to see whether they can be trusted to closer friends. He starts off with small confidences, see how this new person handles it, how they handle being told no, and whether they express concern about areas he's struggling with. He said the process often takes about two years to fully vet a new friend and determine that they are close enough to be considered "safe."

This resonates with me for two reasons:

1. My first thought when he said that was, "2 years???" that's SO long!! I want a good friend NOW! Being a military brat, and having a mobile adult career, I've often moved so much that it's never occurred to me to take so long in making friends. I'm usually gone in 3-5 years, so I try and form friendships very quickly. I need to work on this.
   
2. It's only recently occurred to me that one could vet people, make sure they're actually safe. Yet here was this man suggesting that very thing, as if it was ancient wisdom we should all have in our hip pockets. This year I've really been working on preventing myself from growing close to another person who wants to be close to me (because they are not safe). I'm realizing that most of the people I've associated with over the years don't validate me, or care about me. Most reinforce negativity in my life, use and/or abuse me, or simply associate with me when they can't find anyone else. While I hate being alone, I'm discovering that the time I do spend with people who are more safe is much more enjoyable and that helps balance out the alone time.

One of the people visiting the show was Dr John Townsend, who has written some books on determining whether someone is safe or not and how to set appropriate boundaries. I have not read them yet, but tonight added to my library search list. I learned a lot just from reading the Amazon comments, so I've pasted links to them below for you:










Dr. John Townsend

Don't Fight the Autism

Thought for the day:

'Don't fight the autism; you will NEVER win. Know what the problem is and find a way around it.'

This tidbit of wisdom comes from Mama On The Edge, a blog done by a mom of teens with Autism. I could write volumes about this quote, but it will have to be another day.

Stop Daydreaming. Experience the Here and Now.

I'm stressed.

I know I'm stressed because I'm daydreaming lately. Daydreaming a lot. Daydreaming so much that I start acting out the dream. I start talking my part. I start making facial expressions (in real life) that the daydream "me" is making. Other people don't know I am daydreaming. They think I am talking to myself, acting crazy. This is something I do when stressed. It sneaks up on me, and all the sudden I realize I'm doing it. Once I realize it, I know I need to reduce my stress level, and confine my daydreaming to "at home" until I can do so.

This daydreaming is not healthy: It sucks up massive amounts of brainpower, which then leaves me useless for work or errands. It keeps me from getting proper rest, because these aren't "regular daydreams" or even "dreams." My mind is exhausted when I finish. And, finally, it makes me look crazy, thus opposing my goal of assimilating into the NT world until I can retire. I've often wondered if these daydreams are what professionals call "delusions," but I'm afraid to ask.

The daydreams entice me, though, because in them I'm beautiful, loved, desirable, and wealthy. In real life, I'm none of those things. And the daydreams feel so good.

A daydream snuck into my morning run. I joined a running group not long ago, and I have been forcing myself to interact with others, listening to them chat because it keeps me grounded. It keeps me experiencing the "Here and Now" instead of drifting off into a fake dream-world. But today I arrived late, and was on my own for 8 of the 10 miles. The daydreaming was so intense that at one point I ducked an imaginary fry thrown at me by a friend in the dream. And almost fell into members of my group who had hit the turn-around point and were running back towards me.

This is when I realized I need to stop daydreaming. I need to reduce the stress level. I need to figure out what I'm unhappy about and take steps to fix it, so that I won't be stressed.

I ran hard to catch up to a group of runners, and pushed it the last two miles, listening intently to their stories. I resisted the urge to drop back (and be "alone") so that I could daydream, but focused on remembering the details of their week's events- picturing them in my mind as vividly as the daydreams. It's not huge progress, but it's a step forward.

The "Here and Now" is not as much fun as the daydreams, but it's REAL. It's REAL people, REALLY running with me, REALLY inviting me to eat with them afterward, REALLY inviting me to XYZ event next week. The daydream world is more intense, more fun, more exciting- and there's no pain, no tears, and no one screaming at me "Why can't you just be normal?" But at the end of the day it's not REAL.

I'm curious as to whether anyone else out there has had experiences like this, and what you've done to overcome them?