new post!

New creatures!

New name!

New stick!

New strategies!

New strategies elsewhere!

New troubles!

for your information

The image of the dog, located in the profile section?

That is an actual photograph of M. It only looks like a drawing because I'm a sketchy character (Ugh. That's terrible word play! I receive three demerits. Drawing? Sketchy? Make it five).

The photo was taken early last year, so it's relatively recent. I was at a pub, enjoying a martini. Click.

Maybe you've seen other photos posted here before, but that was a stunt M. A stand-in. Not the real deal.

So please...go ahead. Bask in my lugubrious visage.

follow up

In reference to the last post about Asperger's in film, Variety has up it's review of 'Adam', here. Unlike The Onion review, it's positive, but I'm still harboring the same suspicions about it. The reviewer has one interesting complaint: the film missed an opportunity to include a comedic sex scene. WTF? "This film was okay...I just wish I could have laughed at the main characters expense a little more". The reviewer doesn't actually say that, but seems about right.

Again, AS in a way that's fully developed: good. AS as plot device: not good.

Billy The Kid...other AS films...anticipatory cringing

Movies, movies. Oy. This may not be a good trend.

I.

One of the writers for The Onion went to the Sundance film festival recently and watched several films each day he was there. He's been posting little mini-reviews for each day.

I've been hearing about one of them quite a bit lately...it's called "Adam". About a guy with Asperger's trying to navigate a relationship.

Just based on the synopsis, I've been kind of dreading it's release. I may be wrong...I'm willing to keep an open mind...but it looks like the kind of film that idealizes the character a bit, something I loathe.

And the review sort of confirms that fear. Here's the review...you have to scroll down, I think it's the second film he describes.

It's also worth scrolling down further and reading the comments...where people try to define Asperger's, place it in relation to autism. Some of them are insightful. My sense, though, is that a time when the general public understands AS is a long way off. What it looks like, how it manifests itself. Until then, we can probably expect a lot of comments like one that follows the review: "My brother has it...it makes him an asshole".

(It's kind of frustrating, the number of times I see sentiments like that: the suspicion that AS is a cover for annoying personality traits. In terms of the general public, there seems to be very little grasp, so far, of the basic issues involved...the difficulties with sensory overload, social comprehension, the specific mechanics of mind-blindness, and so on.)

II.

Anyway, the point is: the syndrome is starting to show up in movies and it's making me cringe.

Another film I haven't seen...and will never see, no matter what punishments are threatened: 'P.S. I Love You'. A romantic comedy starring Hillary Swank. Looks dreadful. My understanding is that one of the characters has AS...and he's basically presented as an innocent goof who just can't help but be honest and sweet and lovable.

Hold on...getting sick. Must...not...vomit.

III.

There's gotta be a way of avoiding the two traps that appear to be forming:

Trap #1: Idealizing AS. Making it's differences "pure...courageous", instead of human. Which is what 'Adam' appears to be doing. (The problem with idealizing courage: it emphasizes otherness. It puts the viewer at a distance from the character. "Wow, look at the way this strange person tries to act like the rest of us. So noble". When instead, viewers need to be put in the shoes of the character. Empathy = lack of distance. Then we're getting somewhere).

Trap #2: Reducing AS to sitcom material. "Aren't these innocent man-children hilarious!" Which is what 'P.S. I Love You' appears to be doing. I'm glad the movie bombed. I hope they re-make it...so that the re-make can bomb as well and it will be doubly marked by failure.

(And again, with 'Adam', I could be completely wrong. I've already pre-cringed, but I can call do-over if necessary.)

IV.

There was a film years ago about two people with Asperger's navigating a relationship...'Mozart and the Whale'. It's intentions seemed to be in the right place...it just wasn't a very good movie. You could feel the director educating you about AS. "In this scene, we'll be observing this trait. Now let's go to the next scene, where a another trait will be conveyed". It was like they threaded a plot through the diagnostic descriptions, making the characters feel more like educational mannequins than real people. (On the other hand: if this film gives people the impression that all guys with AS look like Josh Hartnett, then I'm all for it. It's a modern classic).

V.

One film that side-steps the traps and the bad writing: 'Billy the Kid'. It came out on DVD recently. It's a documentary about a teen with AS.

What I like: Asperger's isn't mentioned in the film once. Not once! That's beautiful. And the director, Jennifer Venditti, doesn't educate...she doesn't analyze or tell you how to interpret any given scene. She just turns the camera on...follows Billy around for a few days...and you see it unfold: him, in all of his kindness and flaws and social awkwardness and anger and strangeness and resilience.

It's just a straightforward profile. He's not idealized. He's not sitcomized: the consequences of his struggles are too painful for that. It's just a very stark, vibrant picture of Billy and what he's up against.

Which is the warning: very, very hard to watch a lot of the scenes. He interacts with classmates...family...a girl he has a crush on. And he just does not have the social comprehension necessary to successfully navigate these situations. I don't know what it's like for most people watching this...I found it to be brutal. This would not be one for kids or teens to watch. Too emotionally charged for anyone but the chronologically-grown.

But if people could see 'Billy the Kid' and not these other crap films about Asperger's: it's all there. You can see the specific moments where his lack of body language is a problem. You can see where his conversation skills are severely lacking...and where they push people away. You see what he's really wanting more than anything: to like people and to be liked. Such a strong desire to connect. Such a big heart.

And I guess that's the other thing that really struck me: no matter how stressed he is about a social interaction? He never avoids it. He sees a group...or a cute girl. He spends a moment pausing, breathing in, trying to compose himself. And then he walks right up to them and starts talking, starts trying to connect. Over and over again. I kept waiting for him to withdraw, to walk by, avoid the stress. But he just keeps trying. It's painful to see, but it's amazing.

Resilience in what is clearly not an idealized portrait: so tough to pull off. That's human. That's what we're needing.

Here's the main site for the film. Definitely click the "trailer" option for a glimpse of it.

VI.

In summary: I am open to different opinions on 'Adam'. I am open to different opinions on 'Mozart and the Whale'. 'Billy the Kid' is such a challenging film that I'm not clear on how others might react...certainly open to different opinions on that one. However, a different opinion on 'P.S. I Love You' would result in immediate banishment from the planet Earth.

Walls (part 7 of 9)

(part six)

I.

So I was quite social in college.

Me. M. Going to parties, mixing it up. Interacting with The Humans. Doing an awesome job of seeming life-like. If you pulled the string? I even spouted small-talk.

Some of my most cherished absurd memories involve me roaming around frat parties trying to pretend to give a shit about sports. "Yes! I did enjoy the way that team and/or player moved a ball around for the purpose of scoring points. Endlessly fascinating."

Strangely, I never bonded with any of these people. Can't figure it out.

(I was never involved with fraternities, but friends of friends were. I got an anthropological kick out of attending parties, doing some serious people-watching.)

II.

The problem was that 1. my social comprehension was lacking and 2. I was largely unaware of this. I just kept mimicking conversation and non-verbal cues...going through the motions...waiting for my normalcy to kick it.

Consciously, I had figured out that I lacked natural body language. But I was never able to develop a nuanced grasp of the signals being exchanged around me. I stayed locked in the mind-blindness, very alone, very detached, not getting why.

By my final semester, I was severely depressed, feeling utterly defeated by my inability to connect with people. I was particularly concerned and hurt by the absence of...shall we say...special lady friends.

You know what I'm talking about. Purr. The shenanigans.

I was way too introverted and socially inept for that to be happening. This fact took a huge chunk out of my self-esteem. A few months before school ended, I canceled all of my grad school applications. I cut ties with family, friends, save for a roommate. I went into hiding.

That was 1998.

I stayed hidden until 2005.

III.

I emerge to make one more try. I start therapy...choosing a guy randomly out of the phone book. We have an enormously stupid conversation wherein I learn that my "animus is overdeveloped". I call do-over, try someone else.

Find a bright, compassionate psychologist. I'm trying to remember what my mood was when I first saw her. Thinking back here...

Pitch-black, apocalyptic, end-of-the-world depression.

During the first session I interrupted The Doctor with, "Ugh, you seem way too nice. Just...say something useful, okay? Say it within a few months or I'll fucking kill myself."

Dream client!

(Just as an aside...two-years later, The Doctor read a few of her notes from the first session. We were having a "remember when" conversation...she flipped through her notebook, read her impressions. This is what she had written: "Asperger's. Suicidal. High IQ. Refer elsewhere."

IV.

I stick around. She educates me about cues and signals. I know I lack body-language...she helps me understand: I'm also not seeing it in other people.

No one had ever told me that before.

She sits up and demonstrates. Gesturing, providing examples. "This means this. Eyes moving this way...means that." And so on, over a period of many months.

It makes sense. I go out again, slowly beginning to socialize...I see it everywhere.

All of that language I had been missing. All of that connection, communication.

All of that time lost.

I feel devastated. Bitter. I see things more clearly...have an easier time navigating social situations...but it's still step-by-step. It's analytical, not intuitive. She says, "It may become intuitive. It may not. This may always be a struggle".

Angry. I'll spare you the details.

At the beginning of 2007...age 31: haven't made a new friend in ten years...have never had a girlfriend.

V.

Co-worker invites me out for drinks. We drink. She's suffering from depression, she says. I tell her, "Been there." We trade war stories. She opens up. I open up. She's particularly interested in the Asperger's Syndrome. She asks, "You don't like being touched?" I tell her, "I like being touched. It's just intense."

I wrote that we were opening up, but that was just my impression at the time. What was really happening: catastrophic miscommunication.

I was saying, essentially, "I can be uncomfortable with people".

She was hearing, "I can play hard to get."

She liked this. We hooked up. My first time.

I struggled with my comfort-level...the sensory issues. I articulated this to her, while we were in bed, continuing to think we were opening up. She thought about it...looked hurt...asked me if I found her to be repulsive. My sense was that this was not a good sign. Really. Pillow-talk...the word "repulsive"...just not a good mix.

Then she left and never spoke to me again.

Hurt. I'll spare you the details.

VI.

(I'm rushing through this. Look at me! I'm getting down to one-word sentences. I tell you, if I can get it down to meaningful one-letter sentences, I'll be set).

The Doctor...imminently practical...wanted to focus on "what you can learn from this". I was too upset to hear that. Too depressed, too demoralized. I explained that the situation was off the table, in terms of discussion. "We can move on, talk about other things...do not bring it up again".

Childish, in other words.

On the other hand, this does wake me up to the fact that I have to start a little slower. After avoiding social interactions for so long, I need to ease my way into things. So, after the co-worker deal, I just work on conversation. I go to book clubs, public lectures, art shows. Just talking with people. Sounding out my strengths and weaknesses, trying to build a more stable trajectory towards connection.

(It's during this time that I successfully make friends. Human friends, even. A few posts go into that...this one, this one.)

A year later, I tell The Doctor, "There's this other co-worker. She invited me out for drinks."

The Doctor gets tense.

also

In reference to the syndrome and relationship complexities, I forgot to mention that this guy, Gavin Bollard, is also doing a great job of detailing the issues involved.

He breaks down the various components...where things can go wrong, where they can go right...offers an overview of different coping strategies.

The tone of it is very constructive, very positive. It doesn't have any of the pessimism or negativity you find on other blogs (like, say for example, The Incipient Turvy...I mean that M dude, yeesh. Lighten up! And what's with that title? I googled "turvy"...it's not even a word! Anyway).

In other news: I've decided to start referring to "doorknobs" as "solid hyper-links".

That is all.

&

She sits back, composed.

I shuffle throw pillows around...arrange them, re-arrange them...eventually lumping them off to the side. "These are...anyway."

It's quiet for a bit. I close my eyes and listen to people in the hallway.

"Hi," she says.

"How are you?"

"It's cold! Even in here. The heater has been running, but...burr."

I look at her desk. Count the pens.

My legs are crossed. I pull on a pants leg, try to cover the sock. "I never buy the right size. I trade them in...and still manage to get the wrong size. Too long. Too short. I'm some kind of off-kilter number. Whatever that means."

"Tell me about your week."

I rub my eyes.

"M."

"The new receptionist looked stressed out," I tell her.

"I don't know what's going on today. It's unusually hectic. Bad week for her to start."

I look at her and hold the eye-contact. "There," I say. "There's your eye-contact for the day."

"Hmm."

It's quiet. She stretches her arms out...what she does when she's uncomfortable. "You can just say it," she says. "Whatever you're holding on to there."

"New year. I don't know what else to say. Just holding on to that thought."

"And what do those words mean to you?"

"Yew near. Woo ear. I feel the same about it. I don't feel anything. You tell me what to feel about it."

"It's like...," she pauses. She lifts her chin, trying to catch my eyes. I look. She doesn't say anything else.

I look at her bookshelf...at the little plastic farmer on one shelf...the little plastic cow...the ceramic frog...the book end shaped like a swan. I look at the door...the knob, which is more like a lever. I close my eyes, open them.

She sits up straight, stares. "Yah. It's like there's this presence in the room. I guess I'm just trying to figure out what you're not saying. It's like..."

"You're shirt," I say. "I've tried to keep track of your sports-team shirts. It's a lot of different teams."

She goes casual sometimes...shirts and jeans. She's one of those people that can pull that off.

She names the team. "Football team where I went to college. My old stomping grounds."

"That's three sports now. I've seen football...basketball...baseball."

"Unfortunately," she says, "none of my teams ever do very well. Like, ever. I used to think it was bad luck, but then I realized...I prefer those teams, if that makes any sense. I don't even think I'm much of a sports fan, compared to a lot of people. Like the sport itself...the format...it's not my focus. I just like the underdog. Those teams that aren't supposed to win."

"That's a very female thing to say."

"Hmm. Anyway. The new year is on your mind. You don't seem very...." She pauses, stretches her arms out more tensely than before. "Your thoughts are louder than your words today."

The heater starts running. I listen to it's amplified silence.

The Syndrome = sexified

Michelle O'Neil brought this writer to my attention: Amy Gravino, who is working on a book about dating and sexuality from the perspective of someone with the syndrome.

Thanks for the heads up, Michelle.

By far, the syndrome and sexuality has been one of the most difficult topics to find information about. I'll occasionally see advice columns or broad overviews of the issues invovled...but very few personal accounts. So, I'm looking forward to learning more about Lady Gravino's writings, thoughts. It's an exciting book to find out about.

I received the diagnosis in 2005, at the age of 30. Prior to that, I had been unable to successfully navigate the moderate sensory issues and the more serious difficulties with social comprehension. I couldn't make sense of my reactions, was unable to fully understand myself, so a lot confusion and isolation ensued.

When the syndrome was first mentioned to me (by this moron), I immediately went home and googled the word, read as much as I could. And it was frustrating to find very few stories that felt familiar to me. I'm an adult, facing serious social deficits. Most of the material I found online was either about 1. kids or 2. older adults who had already established themselves in life...with career, family and so on; these seemed like people who generally received the diagnosis late and reacted to it in a very positive way, I think feeling a sense of relief that there was now an explanation for their differences.

Reading these stories, I felt sort of disconnected from them because I was no longer a kid...and I was clearly not on the "AS equals success" trajectory. I was somewhere in between the two. An adult, but not forming a career: remaining in low-stimulus (and therefore low-paying) graveyard shifts. Not forming relationships: had terrible difficulties making and sustaining friendships. Also, absent the diagnosis and some therapeutic feedback, there was never going to be marriage and a kid. At 30, I had never had a relationship. No girlfriend, no sex...just a kiss, many years before. One really confusing kiss.

The point is that it was frustrating not finding similar stories (keeping in mind that I first googled AS in 2005...there was much less available compared to now). I did not have an interest in hearing pep-talk descriptions. "Everything's fine! The syndrome is wonderful!" I did not feel a sense of relief...like "everything makes sense now". I wanted to cut through the BS and know: what is it? What can I expect? Is there a way to manage the social deficits? What is my life going to look like from this point on?

I think what I wanted even more was a sense that my experiences were not all that unusual. In other words: I wanted some kind of frame of reference for my past. Zero social connections...sensory issues that make physical intimacy confusing. I wanted descriptions of that. I wanted questions answered, like: what is an average date like for someone with AS? What happens when someone reacts negatively upon learning that their partner has AS? At what point in the dating process do you bring up AS? I was right in these middle of these issues and sought personal accounts dealing with all of this. I knew my answers to the questions...I was very curious about how others might answer them. Again, I was seeking that frame of reference for my experiences, some way to not feel so alone with it. And I wanted details, descriptions, not empty assurances that "Everything's going to be great! Be yourself!"

To this day, it's still tough finding other people in this process, describing it. There are far more, though, in just the past four years, so that's a hopeful sign. When it comes to people trapped between #1 and #2, my sense is that there are a lot of us out there, stuck in this social no-mans land, going into our 20's and 30's and 40's and up with no clear sense of how to form even the most basic forms of social connection.

In terms of writing about this...I'm wondering if the subject matter is the problem. Like, not doing well socially...it's embarrassing. Mishaps ensue and it's kind of tough admitting a lot of this. I've been putting up posts about first kisses, first sexual encounters and I've been procrastinating terribly. Most of these are already written...yet I'm just posting them randomly, infrequently, sort of cringing. Bloop. Then I turn my computer off and avoid it for a bit.

It's tough! But that's why I was so interested in Amy Gravino's book, it sounds perfect, like the sort of thing we've been needing. Maybe there can be a snowball effect with this subject. Some of it gets out there, makes it okay to talk about, then others can feel a bit safer describing their experiences. One day it will be an entire genre of disconnect, re-connect, self-knowledge and awkward love.

The syndrome and sexuality. Come on! Let's get this going.

betters

I tell you, if you want to put a little defiance in your step: read this. It made my week. The images of that little one stepping out, meshing...challenging herself, having fun...and the love that Jess Wilson radiates...that's some serious defiance. That's what it's all about.

Also defiant: Aguales recently spoke about adult Asperger's. At a conference! In front of people! That takes some strength. I get stage-fright operating my toaster.

Hannah (another strong little one with a devoted mom) is taking her first steps into the turvy. Seeking services, meeting doctors, learning about herself...all with the attentive help of dedicated loved ones. I've enjoyed these descriptions immensely.

Finally: an entire documentary about my favorite typeface! Whee! This has been ordered for viewing. Happiness will ensue.

Walls (part 6 of 9)

(part five)

This thing you are...

Wait. Give me a minute.

This incipient...or, umm...communal

Hold on.

I.

Have you ever wanted something so much that you did everything you could to avoid it?

You have. I promise.

Also: have you ever...this question probably seems out of the blue...but have you ever hallucinated?

Oh yes. Don't care who you are...you've hallucinated.

Just like me.

It's weird, actually...the way you have sensory issues and didn't even know it.

II.

If you tap my arm...I'll feel it. No big deal.

If you tap it repeatedly...then it gets different. The tap takes on a life of it's own...it echoes.

Tap...tap...tap...then you stop. But I feel it again anyway...the tap happens again, absent your actual touch.

Contact is so intense that...for whatever reason...it prolongs itself. My body tells me that it's still happening, even when it's not.

I've been referring to it as a tactile echo.

New clothes (with new textures) can set off the echo. Physical intimacy sets off the echo. Any new sensation can dig in, repeat itself, replicate the experience. It usually feels identical...sometimes less intense, like an echo...but real, very similar to the touch that set it off.

And I like the word echo, because it's easier to deal with. The accurate term (tactile hallucination)...I don't know. Blech. It lacks poetry. Let's stick with echo. Something safe.

III.

However...

(this is the part where you and I realize we're not all that different)

One time you went swimming. You were in the pool for hours...swimming about, splashing, diving down, floating. Having fun.

Your fingers wrinkled, your eyes stung a little from the chlorine.

Then...after all of that time in the pool...you climbed out, into the yard. You toweled off and started walking back towards the house.

Whoa.

Everything felt strange because, as you walked, your body continued to feel like it was immersed in water.

You took one step, cautiously...then another. And even though you were in the yard, you felt slowed down...submerged. It was weird, right? For minutes afterward, on dry land, you could still feel the resistance of the water.

So if you've done that...if you've been swimming and then continued to feel the water after leaving the pool...you had a tactile hallucination.

You! With your so-called normalcy! You experienced a perception in the absence of a stimulus: the textbook definition of a hallucination.

IV.

However...

(this is the part where you and I realize we're kind of different)

I had my first kiss when I was 23 years old. I know. I'm not a social butterfly...I was late with that one. (Don't even ask me about sex. Well...until the next post, then we'll get into that.)

It was my last semester of college. We were in my car, talking...she leaned over, kissed me...

I should probably add a little backstory to this.

My sensory issues are relatively minor compared to a lot of others with AS. With touch and vision I am hyper-sensitive. Taste: normal. Hearing: no problems. And the point is that, no matter how overwhelmed I get, I never have serious behavioral problems. I can shut down, emotionally...I can stop communicating, go into my personality screensaver...but that's about the worst of it. No anger issues, no lashing out. I'm fortunate in that regard.

But prior to my first kiss, I wasn't clear on the extent of my sensory issues as they related to touch. I didn't know what to expect.

The contact you experience growing up (hugs from family...little kisses from mom)...those are qualitatively different from the physical intimacy you experience with romantic partners. For normal people? No big deal. People happily make the transition. But if you have sensory issues, it can be terribly confusing...knowing that you desire contact...not knowing how you'll respond. Carrying around that large, anxious question mark inside of yourself (a problem exacerbated by the lack of a diagnosis at the time. Again, confusing) .

Just to provide a counter-example: with my eyes...I knew light hurt my eyes. Always had. Light was something I came into contact with every day of my life. Kissing, on the other hand? Prolonged kissing at the end of a date? That doesn't happen every day. That only happens when it happens. And then you have to learn about yourself quickly...as it's going down. You're a stranger to yourself in unexpected moments...and the introductions can be jarring.

What was I...? Oh.

We were in my car, talking...she leaned over, kissed me...and that went on for a bit. Kissing, kissing. Amazingly perfect. I like contact precisely because it's so intense. I need it...feel alone without it.

We stop kissing. We talk. But I'm still feeling the contact on my lips...this echo is happening and it's uncomfortable (because it's new). We're talking, but my lips are convinced we're also kissing. Then she leans forward and kisses me again and it's too much.

I pull away. I grab the corners of my hair and tug, trying to...I don't know. I pause and fake-laugh. I want to seem comfortable (I want her to like me). I tell her, "I just...I may need a minute". But at that point, it's really too late. I'm caught off guard by the sensations. And shocked by what's coming.

I open the car door, walk into the yard and vomit.

First kiss. 23. Last semester.

I decide to be alone for awhile.

V.

This is all painful. We need distraction. Just...count to ten or something. Create a little mini-intermission. Go to the lobby, get drinks, candy. Whee.

The other question: "have you ever wanted something so much that you did everything you could to avoid it?"

This is a lame metaphor (or is it a simile?). But: one time you drank a milkshake too fast and experienced brain freeze.

(I know! This is lame. Bear with me.)

This sensation you liked...the pleasure...it hurt you. Something nice caused you pain.

So, the next time you had a milkshake, you felt the exact same desire to consume it all at once...but you didn't. You went slow...and you carefully monitored yourself for pain, adjusting the consumption rate as needed. You didn't stop drinking milkshakes...you just learned that pace had to be factored into the experience.

You wanted something...the entire milkshake, all at once...but avoided it. You learned the rate...the rhythm. You learned to balance two factors: desire and reaction.

VI.

Er. I'll find better metaphors for this. But the goal is: things we have in common. The goal is: what are sensory issues we've all felt? What are the bridges?

Because I have to believe: eyes closed...no mask...

This thing you are.

This incipient turvy.

It revels in communal dislocation.

*

[sneaking onto a work computer...]

grrr....usually i only have access to my roommate's laptop...i tend to use it frequently, write posts from there, hasn't been a problem. but, with no technology of my own, i run into problems when roommate is out of town...or when the aforementioned laptop is in the shop for an extended period of time. both things have happened recently, in that order.

boo.

so...i'm just waiting for a bit...when the ailing laptop is recovered, patched up, back on it's techno-feet...posts ensue.

i sneak away now...ninja-like, invisible to the untrained eye. sshhh.