My son Austen* looks like most nine-year-olds, except perhaps a bit taller, with long legs that carry him swiftly across the ground as he races you to the car or the door of the house or the mailbox. He has curly brown hair, golden brown skin and painfully long, lush eyelashes ringing his deep brown eyes. When he flashes you a big grin -- as he does when he's thinking about something funny that happened at school or his latest high score on a favorite video game -- you see those new adult teeth that still look a bit too big for his mouth, like a young colt's. His fingernails have a tendency to be dirty, for the same reason the palms of his hands are calloused: from swinging on monkey bars and climbing trees.

What you won't notice immediately is his disability...

Read the rest at: http://blog.beliefnet.com/thinplaces/2010/09/perfectly-human-invisible-by-mary-p-jones.html

July 4th is Independence Day here in the United States. It is also Israeli Girl's birthday. My husband's relationship with Israeli Girl was his bottom: it was what finally caused him to admit his sexual behavior was out of control, that he was an addict. I began calling her Israeli Girl contemptuously: while not technically a girl, she was only 19 when my 30+ year old husband met her on a business trip abroad and began a several year long relationship with her. I don't feel the same contempt anymore, yet I still cannot quite bring myself to grace her with a name. Somehow, giving her a name gives her some humanness, some power, that I don't yet want her to have.

For years, Israeli Girl was one of the most worrisome splinters in my brain. I remember one year, on July 4th, Mark spent $70 of our money (I was furious when I saw the price) on a single international phone call to her, to say happy birthday. I listened to the entire call, jealously, edgily, because something seemed wrong, suspicious, off. I listened for any hint in his voice of anything beyond friendliness -- some trace of desire, seduction, attraction, deep caring, love -- but I didn't hear them, although I knew the sound of them well. And I settled back into a dissatisfied uneasiness, which persisted, until years later, everything fell apart, and made sense.

After my husband admitted his addiction, admitted that one April day he had finally hit bottom with Israeli Girl, July 4th was tainted. I imagined all of those beautiful fireworks going off to celebrate her birthday. I remembered the phone call, imagined what he must have written to her in those years e-mail messages they exchanged, and I couldn't stand to leave the house. This night four years ago, new in a black place of crushing, disbelieving pain, I cringed at each pop of a distant firework, each whistling rocket, and felt they were searing and exploding inside of me.

The next year, Mark and I were wondering aloud whether or not to go out and try to see fireworks. He was tired, and I was still angry and depressed. We both understood that subtext, although with the kids listening, we simply said to each other, "Should we go?" My son heard us talking and said, with verbal skills newly developed after a year of speech therapy, "I want to watch fireworks!" So, it was decided, and I declared it my Independence Day. I was not going to let a tyrannical past rule my present; I would not let the past cast a shadow that blotted the fireworks from the skies my children saw.

We didn't have a destination that year, we simply drove around until we saw some fireworks and parked the car by the side of the road to watch them. There is a Schoolhouse Rock song my son liked to listen to that contained a line, "Red, white and blue fireworks like diamonds in the sky..." As he gazed up into the sky, my son echoed it back, gasping, "They look like diamonds in the sky!" He was thrilled to see a smiley face in the sky, and to watch the blaze of fireworks that marked the end of the show.

As I was putting him to bed afterwards, I told him that he could go to sleep and dream about trains (which were his obsession at the time). When he said he didn't know what dreams were, I told him they were pictures in your head while you sleep. He looked thoughtful, and said, "We can go to sleep and see fireworks in the sky, and we can see that face and then lots and lots like diamonds in the sky."

See, I worried about Israeli Girl's birthday ruining the fireworks, when in fact, my son's joy, and the magic he saw in the sky, threw a light on that night that no dark memory could blot out. I wouldn't think of missing fireworks after that year.

Last year my daughter was awake and old enough to appreciate the fireworks for the first time. As she walked outside, she saw the moon, which was quite a new and exciting sight to her, since her bedtime was 7 p.m. She asked if the moon could come with us to see the fireworks, and I promised her it would. During our car ride, she looked out the car window, checking to make sure that the moon was following us to the fireworks display. When we arrived, she was thrilled to see the moon, still there, watching. She sat with her mouth open wide through the whole show and was too excited to fall asleep, even so long after her bedtime, on the way home.

She and her brother have been chattering all day about the fireworks, about sitting outside and eating cookies and having the moon there and seeing lots of them explode at the end of the show and waving our flags and singing love songs to our nation, like "America the Beautiful," which gives me goosebumps (truly) every time I hear it. My life may not always be perfect, and my country may not always be perfect, but both of us are free.

Happy Independence Day. Enjoy the fireworks.

Hand Wash Cold

Slip transported me
to a time when my son was
newly diagnosed.

Karen and Tanya,
thank you for sharing yourselves,
for sharing your truths.

A few months ago, Mark and I took the kids to a "sensory friendly" movie showing.  Autistic individuals, and others with sensory processing difficulties, can find a typical movie going experience overwhelming.  Movies are loud.  Theaters are dark and often crowded.  The screen is huge and the images on it are flickering and fast paced.  There are previews and commercials before the show that switch rapidly from one theme to another, while we wait impatiently for what we actually came to see.  Then when the movie does start, its story and situations are designed to evoke strong emotional responses: to scare or thrill or amaze us.  And did I mention they're LOUD?

Most of us go to the movies to be a little overwhelmed.  But for some people, all of that can be too much.  So, at sensory friendly showings, there are no previews.  The lights are dim, but the theater is not dark.  And the sound is turned down.  And not only that, it's ok to sing or talk or to get up and walk around, dance or jump if it all gets to be too much anyway.

At the showing we went to, some kids got up and paced the aisles.  Some rocked in their seats.  Some grunted or chirped.  My son commented on the movie at full voice.  (Whispering is only for secrets.)  And we all had a fun day out doing something different while nobody stared.  Nobody glared.  Nobody shifted uncomfortably in their seats and made little "hem" noises in their throats.  The air didn't buzz with electric hostility.  And nobody had to worry that, at any moment, it might.

I don't know about the other parents in that theater, but I felt like I'd been able to put down a hundred pound weight.  The kids and young adults in that theater could all be themselves, and we all understood.  No one said anything or did anything, but there was a palpable sense of acceptance in the air.  It hung there, invisible but enveloping, like the drowsy smell of honeysuckle on a warm afternoon.  What a relief.  Which made me realize just how guarded I am and how much weight, how much fear and tension and worry, I carry every day.

This past weekend, I went to a convention for my 12 Step group.  Hundreds of sex addicts and their partners or family members gathered in hotel conference rooms and ballrooms.  There were meetings and workshops and outings.  There were speakers who shared their experience, strength and hope.  At each banquet iced tea was served instead of alcohol.  No one gossiped about the latest infidelity scandal in the media.  People openly shared their pain and their weaknesses and their gratitude.  And all weekend long, I had nothing to do but connect with my Higher Power in a group of people who was supporting me in doing just that.  All weekend long, I felt I had nothing to worry about and nothing to fear.

Again that love and acceptance enveloped me.  Again that hundred pound weight dropped off my shoulders. Again the relief washed over me.  And again I realized just how guarded I am and how much weight, how much fear and tension and worry, I carry every day.

On the last day of the convention, I wept with gratitude for the gift of having been there.  (If you were one of the lovely ladies sitting around a hotel banquet table with me on Monday morning at breakfast, yes, that was me crying and smiling at you all crazy.) We were asked on that last day if we had picked up any burdens that we wanted to leave behind, and I couldn't think of any.  All I could think was that I needed to try not to reshoulder the burdens I'd set down when I entered.

"But he's unable
to recall faces and names
when shown a picture."

"Vocabulary
tests at a high school level,
as does his reading."

"However, he can't
answer some simple questions
on what he has read."

"I've never seen scores
like this in math -- not ever --
in all my years here!"

"Not just off the charts,
but every calculation
is done in his head!"

"But he can't always
find ways to synthesize and
apply that knowledge."

Is he quite gifted
or severely behind peers?
A little of both.

If you had asked me, before Austen was born, if nearly every detail of my life was fixed in routine, I would have said no, and I would have thought that was quite true. After all, I had free will and all that. If I felt like picking up a doughnut on the way to work today, then, damn it, I could do that. I could drive all kinds of alternate routes to the grocery store. I could drink from the pink glass and not the blue one. I could get away for the weekend or even pick up and fly to another country.

But the fact is, most days I didn't do that. And I never noticed it until Austen pointed it out. I wouldn't notice I'd always served Austen his baby oatmeal in the orange bowl until I put it in the blue bowl and he refused to eat it. I wouldn't notice I'd always driven the same road to the grocery store until I had to stop along the way at the post office or the gas station and Austen would howl with confusion and outrage. I wouldn't notice that always sorted the mail by the mailbox and muttered "junk, junk, junk..." under my breath until Austen started saying "junk" whenever we went to get the mail. There were a thousand habits I didn't notice until I broke course and found that, for Austen, my habits had become compulsions. They were part of The Way Things Must Be.

A few days ago, Austen was playing with Mark while I arranged a playdate for Janie. "Ok, bye. Great, thank you. See you then," I said as I hung up. "No!" Austen shouted, "You said it wrong!"

"What?"

"You said the wrong thing on the phone!"

I struggled to remember what it was I said and realized I'd said something after "bye."

"Oh, did I say something after I said bye?" I asked.

"Yes!" said Austen, "What's wrong with you?!"

"I just don't always think about the rules when I'm talking, buddy. That's the way my mind works. And that's ok. I like being a little flexible, and the other person knew what I meant."

"No, it's not ok. What's wrong with you?!"

"I'm different?"

"No," Austen was getting increasingly upset, and I could tell he didn't want to let go of this question, "What's wrong with you?!"

"I'm crazy!" I said with a smile.

"No, you're not! What's wrong with you?!"

And suddenly, something clicked. I broke a routine, but this question was part of a routine too. It wasn't the exact same question -- it certainly wasn't the same tone of voice -- but I could hear myself asking Austen, "Hey, what's wrong, buddy?" And I knew the answer. Because Austen has an extremely limited diet and is extremely particular about how his food is served, it can be a struggle to get him to eat enough.  He also has difficulty recognizing his hunger (although we can always recognize it based on his behavior), and he can go long periods of time without realizing he needs to eat.  So, when he's at his most anxious and upset, as he was now, the solution has nearly always to ignore whatever he was upset about and feed him.  We also diligently point out to him that his anxiety and frustration are hunger signals, hoping that this will help him recognize his body's cues.

"I guess I must be hungry, buddy," I ventured.

"Ok," he said, "I guess so."  And returned, immediately and peacefully, to his game.

My husband and I looked at each other, eyebrows raised.  Interesting.  In Austen's view, I had done something wrong, so there must be something wrong with me that caused me to misbehave that way, and what he (and we) had linked to misbehavior in his mind was hunger.  I know of other kids who have threatened to put their (seemingly) misbehaving parents into time-out, but only Austen would think to feed us.  I was thankful that he didn't follow me into the kitchen to make sure I got a snack, because I'd just eaten lunch, and frankly, I was stuffed, both with food and food for thought.

Most parents hear it at one time or another.  Some variation on the universal theme of parent awfulness: "I hate you. I wish you were dead. I don't like you.  I'm not going to be your child anymore.  I want a new Mommy/Daddy.  You're the worst parent ever."  These pronouncements are usually inspired by something truly terrible we've done, like forbid our child from diving head first off a playstructure onto concrete.  (Actually, a lot of people married to addicts (for whom the rest of this story may also resonate) hear that kind of thing too, and usually for the same reasons.)  And those words can hurt, even when we know they're just a passing storm of anger and frustration.

But yesterday, when Austen screamed, "I don't love you!" it made me feel, well, loved.

Austen is autistic, and it comforts him when the little details of his world are neatly in place.  One of these details is the need to have all words printed neatly in capital block letters; no lower case letters and no script allowed.  If one of us should write something using any lettering that is offensive to Austen's discriminating eye, he will not rest until he has fixed it for us.  Grocery lists can be found with each item crossed out and correctly rewritten above.  Signatures on birthday cards are blacked out and bear neatly printed versions of the name instead.  If you want to keep a document safe from Austen's pen, you should generally keep it out of his sight.

I've recently been reading over some old journals and letters while doing some 12 Step work, and my daughter Janie has enjoyed having me read to her about what I used to do when I was a child.  Yesterday, I was reading to Janie when (and you can see where this is going, I'm certain) Austen, mistakenly thought to be safely occupied with something else, noticed that (shockingly) I didn't not print every item in my childhood diary in capital block letters.  And this was an outrage.  A crime.  An atrocity.  Austen wanted to fix that journal for me right away.

Of course, the answer to that was no.  No, you cannot cross out every word in my precious junior high diary and rewrite it.  I took the journal and locked it up safely in my room.  At which point Austen told me to please walk away and not look at him.  Nothing to see here. Move along.  He'd just be over here trying to pick the lock.  Just ignore him.

So, being the sharp and totally onto-him mother that I am, rather than walking away, I stopped and said, "Buddy, I really can't let you have that diary.  I wrote it when I was very young and it's the only one I have.  It's a part of who I was and who I am, and it's very special and important to me.  If you cross out the words, you'll be damaging it, and I'll be sad and angry and hurt. I'll feel like you would feel if I wrecked up your electronics collection, which I know is really special and important to you."

And that's when the screaming started.  "No!  You must let me have it!  Promise?  You have to let me destroy it!"

"No, I can't do that, buddy."

"Yes, you can!"

Austen's anger usually comes from anxiety, so I took a guess as to what he might be anxious about and tried to reassure him.  "I love you no matter what.  I know I said I would be angry if you damaged something that is important to me, but I would still love you, always and always."

"Well, I don't love you!" he shouted.

"Do you feel that way because you're angry at me?" I asked, trying to help him label his emotions.

"No," he said, through tears of frustration, "Because I have to destroy your diary, and it will hurt you.  And if I love you, I don't want to hurt you.  But if I don't love you, it's ok.  And I really need to destroy it, because it's WRONG in lower case!  So, I don't love you!"

Oh.  Wow.  I'd really misunderstood and misjudged: the level of his need, the level of his empathy the level of his emotion.  But all I could think right then was that this was the best "I don't love you" I'd ever received.

A recent NY Times opinion piece on toxins and autism has been making the rounds lately, and well, frankly, the piece bugs the crap out of me, and I can't quite figure out why. After all, it seems like, not just an excellent idea, but a complete no-brainer to want to ensure that that the products we use -- that go into our air and water and foods and bodies -- are safe and non-toxic. And it seems reasonable to be concerned, given the thousands of untested chemicals in use every day, about possible links to our health: from the way they affect our organs and tissues to the way they affect our neurological processes. And it seems reasonable to me to want to investigate what autism is and what causes it. And yet...

Maybe it's the fact that the first few paragraphs contain the words "frighteningly common" and "financial and human cost" and "burden." Words matter. And those words, rather than including my son Austen and others like him in the human family, set him apart, as a burden and a cost that the rest of us have to shoulder.

Maybe it's the focus on autism in particular. If the concern is truly about the effect of toxins on our health, why call out autism rather than talking about either cancers or neurological issues generally (both of which were mentioned almost in passing)? Instead, autism is set apart.  Autism is chosen to be the poster child for neurological issues; autism is the frightening specter from which we all must run; autism is the enemy; autism is the pawn in this political game.

Maybe it's that several paragraphs are spent on what pregnant women ought to be doing and only one sentence is spent on the mention that often, at least in the one quarter of autism cases that are genetic, there is nothing a pregnant woman could be doing differently at all. Maybe it's because I can already hear the same voices -- the ones who told me that the "costs" and "burden" of Austen being autistic were my own doing, because I vaccinated him, because I let him watch TV, because I had him when I was over the age of 30 -- now telling moms this is their fault for using the wrong shampoo or for painting their nails, when that may not be the case at all.  The factors are so complex and difficult to tease out that we simply do not know right now, and may never know.

Maybe it's that all of those things leave me feeling that autism is set apart, that my son and my family are set apart, that we are (and have brought on others) a burden and a problem to be eliminated, rather than being an integral part of a situation we all need to work through together.

Periodically, news stories send me into a panic. Do I need to order a truck load of face masks before that flu pandemic hits? Is that TSA security person going to have to strip search me now that some guy tried to smuggle explosives on a plane in his underwear? Would Jennifer Aniston seriously get back together with Brad Pitt (especially with that beard!) as some tabloid's Photoshopped picture of the two of them implies? But my panic du jour is over Bill Gates.

Consider this: a New York Times article about the Gates Foundation's plans to double spending on vaccines.  Sure, it seems harmless enough.  In fact, my first thought on reading this article was: "Bill Gates rocks.  This is going to help so many children.  I wish every billionaire did as much.  I almost want to go buy some Microsoft products now.  Almost, but not quite.  I'd still rather get an iPad."

But my second thought was, "Crap.  Conspiracy theorists are going to eat this up."

You see, many people speculate that a link exists between vaccines and autism.  I personally reject the notion that vaccines played any role in my own son's autism, but I do know people who feel this is true for their children and I can understand that.  But a true conspiracy theorist will take it further than their own personal experience.  I've heard speculation that vaccines are of no benefit at all, only harm.  Some even claim that vaccines weren't responsible for eradicating smallpox.  (Did you know that supposed triumph of medical science was simply due to improvements in hygiene?  Although, mysteriously, this was true even in poverty stricken countries that still suffer from poor hygiene, as well as a host of other diseases for which there was no vaccination program. Hm...)

So, Bill Gates (if we're playing in conspiracy theory territory) wants to give some children autism and kill the rest off with poisonous vaccines.  But why?  That's easy.  The general answer to why is always: world domination!  But if you want to talk specifics, all you have to do is consider the fact that it has been widely speculated that Bill Gates is himself autistic.

Yes, I see you out there nodding your heads.  (Because I'm watching you through the little cameras in your computers.  I am.  Don't believe me?  You look like you're about to yawn, in spite of the fact that you're reading something as fascinating as this.  Yep, you look like you want to yawn, yawn, yawn.  You look so tired, like you're just going to stretch your mouth wide open and let out the biggest yawn in the whole yawning... Ha!  You did.  I told you I was watching.)

So, you see where this is going: Bill Gates, presumably autistic, is going to make vaccines, which some think cause autism, available to millions more children worldwide.  Don't you see it?  He is building a vast autistic army for world domination!

Well, I for one, am ready for the New World Order.  Having witnessed the things that bug my son, I'm pretty sure I know how to send Bill Gates' army screaming away.  But I'm not telling.  I, for one, am planning to welcome our new autistic overlords instead, because well, I don't think the world could be worse off than it is with Bill Gates in charge, and at least we won't contract polio or die of measles.

As I write this, I have a cup of tea beside me, and I am trying to get myself to drink it.  I'm not hesitating because I don't like tea or because I think it will be unpleasant.  I'm hesitating because I'm trying to drink it out of a Pyrex measuring cup, which feels... Uncomfortable.  Weird.  Challenging.

You see, my mugs were all dirty and I had forgotten to start the dishwasher.  Now sure, I could have hand washed a mug, but why not use the more readily available measuring cup?  It has a handle.  It can hold hot liquids.  It's no heavier or more unwieldy than some of my beloved oversized mugs.  But I recoiled a bit at the thought.  Was it sanitary? I wondered.  Um, yes.  It's been through the same dishwasher as the mugs I usually drink tea from, and I use it to make lots of food that I safely and happily eat.  Would the tea taste ok?  Why wouldn't it; the measuring cup is just glass, and I drink out of glasses all the time.  But still, it just seemed... Wrong.

Of course, my son Austen is very familiar with this sensation.  Austen (as those of you who visit regularly may know) is autistic and has to eat his yogurt with a plastic spoon.  It can't be silverware, because those spoons are heavier and will (if left in the yogurt container) sometimes tip the carton.  Disaster!  But even among plastic spoons, not all spoons are created equal.  Austen's plastic spoons must be clear plastic, and not just any clear plastic; they must be the kind I buy (in bulk) from our local grocery.

This has been frustrating.  I've carried a lingering resentment over it.  After all, I once forgot to pack a spoon in his lunch, and the school called.  Austen completely refused to eat lunch without that damn spoon.  The school has plastic spoons of course, but they are white, not clear.  He insisted on a clear spoon.  So, the teachers looked through their own lunches and his classmates lunches for one to trade, but their clear spoons weren't the same brand as our clear spoons.  Their clear spoons had little swirls on the handles, making them totally different.  And because he couldn't eat his yogurt, he couldn't eat anything.  He was stuck on yogurt and couldn't get past that to the rest of lunch.

So, I ended up driving a package of spoons over to school, muttering to myself the whole time, "A spoon's a spoon, damn it!  Why does it have to be this spoon?  There are a hundred spoons at school.  There are even clear plastic spoons at school.  For crying out loud you don't even need a spoon.  You could drink it.  Or lick it off your fingers!  Why do you have to eat the yogurt with this particular type of spoon?!"

But I know why.  Autistic engineer and author Temple Grandin explained it in her recent interview on NPR when she said, "If I say to you, 'Think about a church steeple,' I only see specific ones and I can tell you exactly where they're at. And I was shocked to find out that most of the people see a generalized sort of vague, generalized, generic steeple. For me there's no generalized one. There's only lots of different specific ones."  There is no Platonic ideal of a spoon in Austen's mind, there are only specific spoons.

And I can say that's crazy and troublesome and that I just don't get why it makes eating yogurt at school impossible some days.  I can say that, that is, until I sit here unable to drink out of a clearly very mug-like object, complete with a handle and an ability to hold hot liquids simply because it doesn't fit my idea of what one ought to drink tea from.