The Costco experience

I know that in general, autistic means all the time, 24-7. For TH, I guess it's always there, but from an observer's point-of-view, some situations bring it out more than others. The car is a big time for vocalizing, especially "opera" or this kind of Peter-Frampton-sounding electric guitar noise that TH is particularly fond of.

And then, there's Costco. It's big. It's got every single kind of product known to humankind. When you walk in, the lights glare brightly. The ceiling is high. There are no divisions. There are people everywhere. There's a car parked inside. There are big-screen TVs. Computers. People offering treats. Books. Video. Real, dead crabs. Playscapes.

That might sound like an advertisement for the glorious consumer paradise that is Costco, but for TH, it's the road to Sensory Overload Land.

I don't know why we persist in treating a visit to Costco as a family outing. For some reason (gee, wonder what it is), I don't like to shop there on my own. I'm not even the one who's got the card. That'd be Mr. DFMP's domain. He keeps tabs on when bulk products are on the decline, or when we've hit Defcon 1 on organic milk singles. Then, it's all DMFPs into the car for a big, fun weekend trip to Costco!

The minute we walk in the door, two of us peel off from the rest and spend the rest of the time wandering the store, arm-in-arm, preferably in any aisle we can find that is empty. We'll also take a trip to the relatively quiet corner where the restrooms are. We'll pause by the seafood, sit on the display furniture, try out the pianos. The one thing we won't do is hang out with the other three--Dubya, Little, and Mr. DMFP--while the actual shopping takes place. If TH gets within three feet of the cart, he suddenly loses the power to control any part of himself--movement, vocalization, touching--and we must immediately leave the area again. If Dubya gets within two inches of him, they're both instantly on the floor, rolling around like a couple of tiger cubs. I still can't figure out why the two of them can't remain upright in public whenever they're brought into near contact.

So our entire Costco trip is one long browse for TH and me. It's also like a workout at the gym for Yours Truly as I corral, straighten, reorient, gently restrain, and otherwise physically wrangle my ever-supersizing oldest son, whose shoe size now matches my own. I can't even tell you if he's "like this" at home because at home, I don't have to keep him from knocking over stacks of canned goods, stumbling into the oncoming path of a cart loaded with bulk rice and navigated by an octogenarian, or vocalizing some ancient line from A Bug's Life to the point that all heads pivot our way. These are not issues at home, so they don't bring out "those" behaviors in any way that we feel requires management.

By the time we leave and have our receipt checked in some meaningless way at the exit, I'm exhausted, not only from the second-grader wrangling, but also because I've just seen every single kind of product known to humankind. Because the lights glare brightly. Because the ceiling is high. Because there are no divisions. Because there are people everywhere. Because there's a car parked inside. Because there are big-screen TVs and computers. Because people have been offering us treats. Because of the books, video, real, dead crabs, and playscapes.Because it's Costco.

A look back and now

Got a local newsletter in the mail today, and right there, on page 4, was one of those checklists. The title of the article was "Is Your Child's Development Behind?" Of course, around here, we know the answer to that. Yes. No. Not any more. Yes, still. But I read it anyway.

Ahhhh...it takes me back. Here's the list of "red flags" for toddlers:

--Has tantrums that last 20 minutes or longer (Check. TH)
--Breaks things on purpose. (Check. Dubya, Little Da)
--Hurts or bites other people. (Check. TH, Little...but then again, lots of toddlers bite, right?)
--Does not respond to name by 12 months. (Check. Little)
--Does not play appropriately with toys. (Check. TH)
--Flaps hands, rocks, or sways over and over (Check. TH, Little)
--Does not point or use gestures by 12 months (Check. TH, Little)
--Has no words by 18 months. (No one! Little had about two by then, after two months of speech therapy.)
--Does not follow simple or familiar directions by 18 months. (Check. Little)
--Does not engage in pretend play by 24 months. (Check. TH)

And then there's the "Any Age" list:
--Fussy or cries a lot, even when not tired or hungry
--Has trouble falling asleep or staying asleep
--Does not notice people
--Becomes easily upset with changes in routine or moving from one activity to another.

Hmmm...can "Any Age" mean "Age 40"? Just asking.

Yep. We've all got a bad case of the SIFOs in this house.

Eval done, services will continue, TH is smart

That really about sums it up. He did really well on the cognitive and academic testing. Although he does still show a strange disparity in some percentile scores, he's no longer scoring in any "danger zone" on any of the tests. The scores overall indicate a very bright little guy. This is gonna sound strange, but I've always wondered about that. It's not that I didn't think he was harboring an interesting network of neurons in that enormous head of his, but I had started to think that we would spend many years trying to explain to people, "No, really. He's quite bright," because his behaviors would get in the way of that recognition. I think now, people will be getting it. I may be able to pack away those battle plans.

He's still on the "spectrum" (lately, he's been very flappy and vocal, so that's no surprise to us). Still a quirky one. Today, in the car, he just couldn't stop vocalizing and bouncing around, and when I tried to get him to calm down, he said, "Must...move....and make...noise!!!" And he was serious.

I haven't engaged in any kind of toy-related play with TH in...I don't know how long (gee, wonder if...nevermind), so I was surprised to learn that he's still organizing and categorizing toys when they're presented to him. When he was smaller, he'd line things up and put them in categories, so I guess that hasn't changed much. That tendency will come in great when it's time for him to dive into systematics and taxonomy, I'm just sure of it. I'm pretty sure all great naturalists were on the spectrum. But don't quote me on that.

And...he'll still receive whatever supports he needs in terms of fostering executive functioning skills and social skills. If I could, I'd name every single person at his school who's involved in producing the best possible experience for our son. These folks are a professional, caring, dedicated team, and we are as comfortable as parents can be that TH is in their hands seven hours of every day. I won't be naming them because they probably wouldn't like that. I'll likely send in cookies or something, instead.

And that's it. TH is aware of the testing, and he's aware of his Asperger's. He's talking about it a lot lately, in fact. As we watched the Oscars, he leaned into me and said, "I have some tough things in my life." "Why?" I asked, pretty sure it was going to be some minor seven-year-old issue. "Because of my Asperger's," he responded. He couldn't articulate beyond that.

We obviously have a lot more to talk about.

Rage for fame

I don't know why he asked this question. I can't remember what we were talking about.

We were in the car...we're always in the car. It's Texas. There are highways.

All three boys were present, so I think I was taking them to school. We have some unusual conversations on the way to school. Yesterday's kicked off with, "Why did Hitler do what he did?" We discussed self loathing. "Why did other people follow him?" We discussed hate and fear and what happens when a "leader" says it's OK to hate and fear and, more important, to act on it.

But that was one of our more somber conversations. The Question, from TH, was an earlier day this week. "Mama? Will I always have Aspergers?"

Dubya, sage that he is, answered before I could. "Yes. Of course you will. And I'll always have my brain damage, too."

I sighed inwardly. They think that "brain differences" = "brain damage." We had the inevitable clarification. And then I answered the question. "Yes," I said, "I think you'll always be pretty much like you are right now. But that's a good thing."

TH: "It's good to have Aspergers?"
Me: "It's good to be you. You're a good person. You're special."
TH: "Is having Aspergers special?"
Me: "Sure. But everyone has something special about them. Having Aspergers may end up meaning that there's something you focus on for a long time, that you learn more about than anyone else. You might be the expert people go to when they want to know about that thing."
TH: "You mean, I might be famous?" He thinks he wants to be famous. Little does he know.
Me: "As famous as someone can be when they're an expert on acorns or mackerel sharks, sure."

Then, from Dubya, who always keeps us grounded. In his low, flat voice: "I don't want to be famous. I'm glad I don't have Aspergers." I decided not to mention Michael Phelps, egregious bong user, winner of a zillion well-deserved gold medals, and ADHD poster boy.

So...more clarification in the future. Someday, TH will find out that people like to diagnose in retrospect, ticking off the famous scientists from centuries past--Darwin, Einstein, Newton--and deciding that they were autistic. This kind of link may make him feel like he's a part of a special club, even if the requirements for membership are a little hazy. But what I have to make clear to him, given the tendency in some quarters to glamorize Aspergers as the premier requisite for blinding genius, is that Aspergers /= fame. Aspergers /= genius. Sometimes, a famous genius is...just a really smart person who's famous. And sometimes, a person with Aspergers is just a sweet little boy who really really knows his acorns.

A brave boy in a brave new world

Last week, TH's old "specials" reading teacher--the one whom we credit with initially getting him on his increasingly stellar reading track--snagged him in the hallway. (NB: This story is entirely pieced together from bits and bots via TH, so...possibly missing a few elements). She asked him if he would come read to her current first-grade reading group.

Of course, he declined. I can only imagine the floods of adrenaline that swept his body at the very thought of reading in front of...well, in front of almost anyone.

She persisted, and she bribed him with the one thing she knew would work: If he read for her group, he could choose something from the "Treasure Box." This box is really a collection of cast-off tiny toys from families at the school; we donate them for just such purposes. Our trash, you know, is just about any other child's treasure.

I guess the endorphins or some other effective neurotransmitter agent went around and mopped up all that adrenaline because at that proposal, he agreed.

And he read to the small group of students.

His universe responded with applause, kudos, and cries of "Encore." Put less metaphorically, we, his special ed teacher, his former reading teacher, his current teacher, and his grandparents were all proud. He was so stoked about the whole thing that he then volunteered---volunteered--to read for his old kindergarten teacher. To a class that now has his little brother Dubya in it.

This was big. Very very big. We talked about it all week--not to him, but among our adult selves. It's funny how the prospect of something so insignificant in the universe, so meaningless to almost everyone but us, could take up so much of our thinking and conversation. I'm sure we expended much more energy on this than we did on, say, discussing the stimulus bill.

After a few days of practice--he refused to pick the book himself, and his old kindergarten teacher made the selection--after a few days, he went in. And he did it. He read that book to a classroom of 20 children. And it's a tough audience. I know because I read to them almost weekly myself.

The night before the big performance, Dubya expressed dismay. He was horrified that his big brother was going to come read to his class. "I'm going to be so embarrassed!" he wailed. I told him that he could be embarrassed all he wanted, but that he also should feel great pride in TH, with this courage to go do something that he, Dubya, wouldn't do if a thousand tiny demons were poking him with tiny pitchforks and promising him something from the Treasure Box. Dubya agreed. It would take serious courage to do what TH was doing.

So, he did it. Dubya reported that TH seemed a little "shy" but that he did "a good job." TH was reticent, as usual, but indicated that he might do that again some day.

This is the child whose hands I had to peel off of a door frame last summer at a "camp" because he didn't know the room, didn't know the teacher, didn't know the kids. Admittedly, I'm not going to get him to walk out to a microphone in a strange auditorium full of strangers and read them a book. But for TH, this achievement is on the same level. And it gets him a greater treasure than anything he could find in a Treasure Box, than anything anyone else could give him: confidence in himself. And in large part, we have his teachers to thank for fostering this bravery.

Oh, and the Treasure Box treasure? He selected a tiny plastic toy sippy cup so he could give it to Little Da, his much-beloved baby brother. That was the precious Treasure he chose. Yes, a person with autism can read, can read to others, can think about others, can do things for others. Can, dare I say it, feel on behalf of others, communicate with others.

A thoughtful, brave, and still autistic boy in a brave new world. Our ever-evolving, continually developing TH.

Wait...which one of us is autistic?

Some days, it's hard to tell.

TH, as I mentioned earlier, is in re-evaluation at school (whose staff, by the way, have been kindly reassuring), and as part of that, we've filled out another Asperger's Syndrome Diagnostic Scale. He's going to score (again) well into Asperger's territory, I think (we have a permanent home there), but he'll have relatively low scores on the "maladaptive" subscale. "Maladaptive" sounds so...bad...somehow, but it's really a listing of things about behavior, including exhibiting antisocial behavior, having panic attacks, behaving more immaturely than a child his age, or exhibiting strong reactions to changes in routine. TH does all of these, but I don't really think of them as "maladaptive" as much as I do "anxiety ridden."

I dutifully--with occasional input from Mr. DMFP in case of a tie between my own two hemispheres--checked off whether or not each characteristic was "observed" or "not observed." And as I trundled along through the "15-minute" scale, for some of the characteristics, I found myself thinking, "That is soooooo Dubya." Examples? OK, glad you asked.

Well, pretty much everything. We don't "observe" in TH things such as "has few or no friends in spite of desire to have them" or "engages in inappropriate behavior related to obsessive or favorite interest," or "frequently loses temper or has tantrums," or "prefers to wear clothes made of only certain fabrics," or "has a restricted diet consisting of foods cooked and presented in the same way"...well, I could go on. But we sure do see those with Dubya. He is, after all, the child who was obsessively focused on ancient Egypt for most of his fifth year of life.

Bottom line? If I filled out this scale for our middle son, he'd score higher on it that TH. It's not the first time I've noted this about Dubya. And honestly, Mr. DMFP and I raise our eyebrows at his oddities far more frequently than we do at TH's quirks and "squings" and "squongs," as he would say. Dubya is one odd little dude. If having a liking for both ice cream and graveyards doesn't convince, then his extraordinary art tells many a bizarre tale of that strange, buzzing little mind of his. Good example? This week, he carefully dug up, bagged, and took in for "Show and Tell" an animal footprint from the yard. Yes. He put an animal footprint in a plastic baggie and took it to school. I think it was coyote. Aaaaawhooooooo!

We're having him evaluated this summer for central auditory processing disorder. You can practically tick off the minutes after you ask him a question, waiting for it to make it to the cortex, get integrated, processed, understood, answer formulated, answer returned. In the interim, all you get is a blank stare, but you can almost hear the gears creaking away in there. And that's not all. The answer itself often comes out as incomprehensible garble, either because he's just not making any sense or because we literally cannot understand him when he speaks. Either he needs another speech eval, or that CAPD fruit didn't fall far from the tree.

But what's even harder to decipher is this: Do CAPD + ADHD + 1/2OCD + Tic + Emotional lability = Aspergers? Not for TH, certainly. For him, Right-brain deficits + Motor problems + Classic social skills deficits = Aspergers. Given that I can take elements of each of those equations and add them up to either me or Mr. DMFP (or Little Da, for that matter), perhaps we are just another clustered little example of the many ways in which autism and its symphony of traits can emerge. As Kristina said recently, around here, we have a little autism in all of us.

Valentine, Dubya style

Dubya brought home the following, assembled into a book entitled, Things I Love. I think that the intent may have been sketches of things like your puppy dog or your parents or your Legos or...well, you get the idea. Here's what Dubya wrote, with translations:

(ice cream)

(graveyard)

(sun)

(clouds)

I believe I've mentioned here before that he's mercurial? Well, if ice cream in a graveyard in the sun on a cloudy day doesn't convince, nothing will.

The end of now?

Aaaagggh!

That's the sound of a dilemma, courtesy of yours truly.

TH is in testing this week. He's being reevaluated at school, and the results will help determine his needs and supports in the coming few years. We just got an email that he's doing great. It's hard to tell if that means he's doing great on the testing or if he's just in a fine testing mood. Either way...that's great. Right?

Right?

I have to 'fess up to some free-flowing anxiety at the idea of TH, cut loose, left to his own devices, checking out in class, not finishing work, not focusing on work, not understanding work, not...not doing anything but falling through the cracks. Aaaaaaagh! What if he does so well on the testing that everyone concludes that he doesn't need an aide any more? What if he does so well on the testing that everyone concludes that he doesn't need social skills support any more?? What will happen if no one's around to calm him during chicken noises? During hand flapping? I'm about to start flapping myself at the idea.

Aaaaaaaagh!

How can any parent be torn between wanting their child to do extraordinarily well on IQ and other testing and wanting their child to show deficits? Honestly, I'm not torn. I want these results to show him at his best. The odds, I thought, were sort of stacked against him because he's a little under the weather. But in TH's case, that might actually lead to more focus, to a better performance. But I want them to show how smart he is. What I wonder is, with good scores, whether or not we'll continue to bridge that gap between high intelligence and everything else, like remembering to put on pants before you leave the house.

It's not that I don't want him to succeed. I just worry that if he does, he'll lose supports and slide down the ladder right through the rungs and in between the cracks that open up wider as the school years progress. We've all heard around here that 3rd grade is hard, much harder than second grade, which is essentially a review year of first grade. TH is nervous about that. And now, I am, too.

Normally, I don't worry about things that haven't happened yet. He hasn't done well yet on the testing. And if he does, he hasn't lost his supports yet. And if he does, he hasn't bottomed out and slid through some crack yet. And if he does...

I guess we'll just have to be there to catch him. I also happen to have faith that the staff at his school will be there, helping us hold the net.

And I have to have faith in TH, too. He's showing himself to be more and more capable every day. But he does it against a backdrop of constant supports, at home and at school. He's not going to have a classroom aide forever. He's not going to have us forever. I guess the question is, When does "now" end?

Change and discombobulation

We awoke yesterday morning in the midst of a soaking rain at 5:30 A.M. because the electricity had gone out. Electric company contacted, we got back into bed and celebrated the return of power within about a half hour. The celebration was short lived, however, as the power blinked off again within minutes.

TH materialized soon after, confused by the utter darkness of his room, subliminally aware that the white-noise fan was off, the nightlight gone black. His anxiety brought him to me, where he tucked himself in and fidgeted in his usual way, mostly doing repetitive movements with his fingers. Mr. DMFP went downstairs to unplug the computers, only to return with another little blond boy. "I was scared," Little Da said to me as Mr. DMFP handed him off. "I was sad. It was dark."

He noted that TH was there--I was sandwiched between the two--and he sat up and whispered, "TH! It was dark! I was scared." Then he moved over a bit. "TH! I made a space for you. Come here!" TH, who loves to snuggle with, play with, and be with his baby brother, scooted into the slightly too-small space Little had created for him. And the two of them laid there, quietly, each doing his little hand fidgets with a blanket, the occasional sound of Little chewing on his paci breaking the quiet.

As we listened to the rain (Little, of course, had to ask, "Wha's tha sound??!"), the electricity clicked on again. Immediately, both boys were alert to the subtle changes, a couple of nightlights suddenly, quietly aglow. There was a surge of motion and excitement before we settled back into the restful fidgeting. I don't think we ever really went back to sleep, and at about 7 A.M., we all gave it up and got up for good.

The morning continued in a similar vein, with the power clicking off and on. I envisioned little electric company gremlins gleefully and randomly flipping switches off and on all over the neighborhood. TH seemed OK, even though we were all pretty discombobulated. It's hard to get five people ages 2 through 40 ready to go in an entirely electric-powered home (stove, water heater, et al.) when the power is unreliable. Finally, we just sort of gave up, grabbed some last-minute peanut butter sandwiches, and headed out the door. This kind of shift in plans, in patterns, in structure does not sit well with TH.

It hasn't rained here in ages--we're deep in drought where we live. So, my way to work was fraught with local drivers who seemed to find the water on the streets something akin to Teflon (R). It was quite a trip. After a day of administering a hearty Valentine's week physics exam to my students (sample question: If you run into love and "love moves rapidly away from you while you remain standing, why is that?")...anyway, I gave the Luv Exam and then went to pick up TH and Dubya from school.

As usual, we had the catechism about their day. TH prefaced his information with, "Well, this morning? I was cranky because I thought with all that stuff with the electricity that it was just going to be a bad day because that was so weird and I didn't know what to do...but then at school the electricity was on and it turned out to be an OK day. I was cranky for awhile, and then I was in a good mood again after I figured out that everything was OK after all."

That power off-power on thing had bothered him to the point that he was "cranky"--I'm not sure what a "cranky" TH looks like and would have been interested in seeing that--and to the point that he was anxious that it would happen at school, too. I don't know if someone told him he was cranky or if that was self-identified, but it doesn't surprise me that the strangeness of the morning unmoored him a bit. This is a child who loses it when we try to get him to put on underpants upstairs instead of downstairs because "we always get dressed downstairs!" (Don't ask.)

You may have noticed that in the above stories, Dubya gets barely a mention. As his two high-anxiety brothers wandered around in total darkness, freaked out by the absence of light and white noise, Dubya slept on. As we lit candles and bustled around in the early morning, rainy darkness, Dubya slept on. Even as I extracted him from his bed and dressed him while he stood in a near-comatose state, Dubya seemed to sleep on. When I dropped him off at school, I'm not sure he was fully awake.

You might conclude that among the five of us, Dubya is our resilient one, the one who just goes along for the ride. But there's change--like having to put your underpants on upstairs instead of downstairs--and then there's change, like when your baby brother removes a minute part of your latest Lego creation, bringing the whole thing crashing to the ground. If the sound of separating Legos had penetrated the morning darkness, Dubya would have been out of bed like a shot. I think that's what physicists must really mean when they say, "Change is relative." Hmmm...maybe I'll work that into my next exam.

It defies description

When I was earning my PhD, someone with whom I was working fairly closely got cold busted falsifying data. He lost his job (of course), vanishing from science completely after working for years to get where he was, and he and several authors were forced to retract a high-profile paper from a very high-profile journal. That experience reinforced something I already knew: Don't lie. Especially, do not lie to scientists. Especially do not tell high-profile lies to scientists. Someone will find you out.

It's one thing to tell the kinds of lies that cost money or time, I guess. It's another thing entirely to tell the kinds of lies that pervade the globe, that influence the way parents choose to protect their children, the way research entities choose to allocate millions. It's a big deal to tell a lie that costs lives or that diverts hard-to-come-by funds from research that could save lives.

And that just leaves me wondering: How do you think Andrew Wakefield feels right now? Do ya think he's feeling Thoughtful? By the way, I've had four colonoscopies, and my GI doc never once referred to them as "diagnostic endoscopies," given that they weren't endoscopy in general, but quite specifically lower gut endoscopies. Oh, and let's not get into the appropriate indications for performing such a procedure. It's amazing, isn't it, how far a little euphemistic language will go with some people. But not quite as amazing as calling something colitis when it isn't, or even more relevant, calling something autism when it isn't. Or saying that something happened around the time of an MMR shot when in reality, it showed up weeks or months before.

But what's a little lie here and there when one can say, "It's a moral issue for me"?

That's funny. It's a moral issue for me, too. When did morality become such an elusive, diaphanous thing that ducks and covers and equivocates and omits and shape shifts to suit the very real material gains of the person using the word? I know, I know. Since forever. The godawfulness of this one is that this particular form of morality spread like a virus across parental brains around the globe, infecting our culture, our minds, our thinking, our lives. Hmmm...I wonder if there's a vaccine for that?

Edited to add: Liz Ditz over at I Speak of Dreams is compiling an excellent listing of blog postings and media responses related to this report. Head on over and check it out.

Just following instructions

TH's teacher recommended that we get him The Lightning Thief, by Rick Riordan, as a fun read for him. So we did. It's been sitting on a shelf now for a couple of weeks, even though several of his friends have read the first one and are well into the second or third books in the series, called "Percy Jackson and the Olympians."

This morning, he mentioned that one of his friends was reading it. "Why haven't you started reading yours?" we asked him. And he said, "Because I'm not supposed to."

Naturally, we were bemused. Why would he think that? "Sweetie," I said, "you can read your book whenever you want. That's why we bought it for you. Your teacher thinks you would like it." I don't know if she recommended it because the protagonist is a boy with "issues" (he has ADHD and is dyslexic) who finds out he's a demigod, or just because it's a great read, or both. Apparently, it's also a great introduction to the joys of a classical education.

Anyway, we pressed him, asking him why he wasn't "supposed" to read his book. His response?

"Because when I started reading it, it said, 'Don't read this book!' So, I didn't."

I haven't checked the book yet to see if this is true. If it is, I guess we need to talk about not taking literature quite so literally.

Something to expiate

I've been following the online saga of a family with a teenage autistic daughter. The series, dramatically entitled "Autism 911", focuses on how Marissa's family is using an ABA therapist to bring some peace to their household. The therapist, after only a week of consistent application and working with the parents, has already elicited enormous changes.

The story depicts the family, especially the parents, as having thrown up their hands, given up entirely. Marissa has the run of the house--using the sole computer at will, getting her siblings' things in their rooms with impunity, tantruming until she gets her way. And her parents let her. The way the story reads, she's a tyrant who literally gets to do anything she wants, whenever she wants.

It's an old accusation, the one that blames parents for the behavior of a child with a developmental disorder. Maybe I'm just mean or too strict or too hard on my kids, but I don't care if my children have a developmental disorder. We still have standards of behavior around here to which they're expected to adhere. If they don't, there are consequences, consequences that matter to them. That kind of consistency is why I think our children live pretty darned happy, structured, peaceful lives in spite of the multiplicity of challenges in our household.

When you let one person ruin the lives of everyone else in the household, that's a mistake, I think. You're letting down the autistic child and your other children when you let a situation like this persist. You're letting that myth of the autism monster take root in the minds of the people who live closest to it.

I can't imagine how Marissa's siblings must feel about her. If I had a sibling who was so untouchable, whose anger and tantruming loomed over my daily life and governed its every moment, I'd hate her. And I'd hate autism. And I'd hate autistic people. If I were a child in that situation, I'd equate my sibling and her behavior with that of every other autistic person. The outcome is that the very people who could advocate best for autistics, besides Marissa herself, are being groomed to see autism as a living hell.

Marissa's mother is quoted in this story as saying that since the behavioral intervention, she's discovered that her daughter is "smart," smarter than she thought. And I think that this discovery reflects another societal expectation--or lack of expectation--regarding autistic people. Society thinks autistic people are droning, rocking, unemotional dullards who meltdown and tantrum and with whom you just can't reason. When parents listen to these errant voices of our society, they set the bar so low for their children, they doom them from the start.

The narrator of D.H. Lawrence's poem, "Snake," speaks about the voices of his society urging him to kill a harmless snake taking a drink at a water trough. Against his own intuition, his own natural feeling, the narrator listens to the voices and throws a pitcher at the snake, missing it. As the snake glides away, its attacker recognizes the wrong of listening to those yammering, madding voices and realizes that he has something to expiate: A pettiness. Why did he listen to the voices telling him that snakes are evil, dangerous, something to kill when his own eyes, his own heart, tell him otherwise?

Was it the voices that kept Marissa's parents from thinking that their daughter didn't have to be that way? Did the voices say, "Set the bar low because she's autistic"? Did the voices say, "All autistics tantrum. There's nothing you can do"? I can't say. But there's a lot to expiate here, from society on down. Although much of it is pettiness, it carries enormous weight when it comes to people with autism. And their families.

Planet empathy

The other day, on the way to school, we were listening to NPR--brainless, soft-hearted, stupid hippie lib-types that we are--and one of the morning anchors segued into a story with the following intro: "Children with autism encounter many difficulties. Some have trouble recognizing emotions." Then it went on to describe the new DVD that Simon Baron Cohen et al. have developed to help autistic people better associate facial expressions and emotions.

Immediately upon hearing that, almost without thinking, I eyed TH through the rearview mirror. And he eyed me. And even though neither of us is really very good at recognizing emotion in facial expressions, especially subtle ones, he immediately registered my facial query and responded with his own particular brand of scrunchy face, which meant, "What? No, I don't think that's true about me."

After we had this silent conversation, I said out loud, "You don't think autistic people have trouble reading emotions?" And he said, "No!" Then he said, "Well, maybe." And then he added, "Sometimes."

I know how he feels. I can't tell very well either, unless the expression is extreme and an honest reflection of the emotion being communicated. When I do "get" someone else's emotion, if it's a powerful one--such as sadness, anger, hysteria--my response tends to be a complete emotional shutdown, a shift almost to the "Robot" setting. I could see where that might come off as an inability to understand emotion or read a face. Yet, TH and I can communicate these things with a meeting of the eyes. Not only do I know how he feels, he knows what I'm thinking without my having to say a word.

I mentioned in a previous post that I think empathy ratchets up with shared experience, that it's really about feeling what others who are like us feel. In that post, it was about TH and his inherent understanding of another child--a little girl--who also has Asperger's. The two of them have always been able to communicate with each other, even when no one else could really understand them. I think that each sees the other as "like," making empathy and understanding possible. It's just harder for autistic people because--the frequently cited 1 in 150 prevalence value notwithstanding--there just aren't as many "like" people around with whom to empathize.

Recognition of a familiar emotion is that first essential step to feeling empathy. But there has to be some level of interest, some acknowledgment of shared experience, that links the person expressing the emotion to the one receiving it. Women have their own shared experiences that bring them together in those close-knit communities of free-floating estrogen and endless secrets and genuine support. Men don't form a part of those cliques, and from my experience, find them more steeped in mystery and incomprehensible ritual than a Freemason rite. In this case, I can actually empathize pretty strongly with the men. Those shared female sympathies build a wall against the uninitiated than even a real freemason would have envied.

TH and I, as of right now, don't have such walls, in spite of our presumably inherent Mars vs. Venus differences. Our empathy is free flowing, based on our shared lives, shared sense of humor, shared conversation, and a deeply shared connection. And so it is, thanks to this empathy, that he and I can communicate with one another's reverse images without having to utter a word. And I would say that autistic people may not have trouble parsing emotion, per se. They may just have trouble parsing the emotions of people who, to them, may as well be from another planet.