Some Asperger's Books Are Just Idiotic

Cool rain. Wet pavement smell wafting on the ocean breeze.

Marching band booming. Drumbeats. Christmas carols beaming through the air. Steady rain coming down.

The annual Holiday Parade in our small town on Florida's Atlantic coast was rainy. But blessedly cool, and appropriately holiday-feeling.

NJ marched in the parade with his Scout pack. Not only that, he was one of the volunteers who didn't ride on the float - he wanted to walk alongside it and hand out Christmas flyers to the spectators along the route.

Kid loves to play to the crowd. It's kind of counterintuitive. He really enjoys selling and talking with total strangers and making his "spiel."

And he's damn good at it. Like, seriously.

When he sold popcorn for the Cub Scouts at the mall, a woman came up to me after falling victim (er, I mean, being swayed) by his persistent sales pitch. She said: "Is this your kid?" I was like, oh hell, here we go. She says: "He is the best salesman I have ever met, period. And I am being totally serious." She was about 70 years old and fully under his spell.

Now.

If I had read certain books about Aspergian kids, and believed that every word applied to NJ, it's possible we never would have joined the Cub Scouts in the first place.

I remember reading one particularly crappy book that literally said: Asperger's kids don't form friendships. They can't manage the subtle non-verbal communication, blah blah blah.

It didn't say that they had difficulty. It said, they didn't form friendships. Period.

If that's true, then why would we even bother with Cub Scouts? Why even go through the trouble of enrolling him in social group therapy? For that matter, why not just shut him up in his room and let him pursue his bizarre "special interest" whatever that might be (I hear it's supposed to be train schedules, but so far, no luck...)?

Because apparently he has one special interest and he doesn't care about people or anything outside of that.

I still am not sure what his one special interest is. Swimming? Spongebob?

Computer games?

Volunteering to help homeless families with his mom?

Playing "cowboys" on the bed?

Reading Diary of a Wimpy Kid books.

Playing with Legos.

Playing tag with his best friend Darren.

Going fishing.

Walking along the lakeshore behind his mother's house, collecting shells, sticks, rocks and waterlogged coconuts.

One of these, I'm sure, is his "special interest." I am just trying to get him to narrow it down. I wish he would hurry up and start excluding everything else so I could make more sense of him, and really start to pin him down.

You get my point.

He's certainly very focused in on his passions, when he's pursuing them. That's especially true of video games.

But he doesn't have one or even two areas that he pursues at the exclusion of all others.

And he DOES get non-verbal communication. He gets irony. He gets sarcasm. He gets and tells very good jokes. And yes, many of them are made up, and very off the wall... and very funny.

And yet... and yet. I am not in denial. He's an Aspergian.

Despite the huge growth strides he's been making, he still prefers to do his own thing. He still monologues (I think that's his main Aspie trait, actually, which he shares with his grandfather, big time).

And we still love him to pieces because of it, not in spite of it.

This past weekend, as I watched him handing out flyers to strangers along the two-mile parade route, charming them as he went, I didn't see AS. I wasn't thinking about symptoms, or fixes, or diagnoses. I wasn't worried about whether he was following the behavior patters outlined in the books at Barnes & Noble.

I was just drinking in the picture: a strong, outgoing, involved and beautiful seven-year-old Cub Scout doing his daddy very, very proud.

And to think: according to some of the "literature" out there, none of this could have happened.

Yet it did. And I thank God for it.

The Importance of Mastery

There is no doubt: Aspergians are, as a group, very bright.

In fact, if everyone were Asperger's, there would probably be no Gifted and Talented Education programs. Because everyone would be Gifted and Talented.

But pure intelligence only goes so far in life.

Unless someone can apply that intelligence in the real world, what's the point? I suppose you could say that you can simply enjoy your own profound thoughts. And many people do enjoy their own thoughts, profound or not.

But the real juice of life - the real fun - comes when you apply those thoughts to the world around you. When you help to shape reality for the better, and contribute your personal note to the ongoing symphony of reality... the One Big Song.

NJ certainly helps to shape his world. Just look at his mother's living room! There you'll find an entire civilization populated by small, plastic people. They are engaged in the most marvelous interpersonal struggles and triumphs. Often those struggles end with someone going to Playmobil jail, or falling out of a boat. I'm not saying life is easy in this world.

He also volunteers, serving in programs to help the homeless. And he really volunteers - he asks to do this stuff, and we pave the way.

But what he doesn't do on his own is... homework. Particularly math.

You might think that as an Aspie NJ would excel at math. But it's not his favorite. He much prefers reading, designing systems and virtual societies on the computer, etc.

Just goes to show you: Aspergians are just people. Just when you think you can make a generalization, it dissolves. That's why it's critical to "treat the symptoms, not the syndrome."

However, as much as he squirms and gripes about math homework, he's not wriggling off the hook.

We sit there with him every night. He does his math homework. And we emphasize effort, concentration and progress... and try to downplay outcome (whether he gets the answers right).

It can be a slog. Last night we sat there for 30 minutes. He worked through about 20 addition problems. They were three-digit numbers! Carrying the 1, and so forth. Pretty major stuff for a 1st grader!

But he made progress, even as he completed the night's work.

I found that trying different ways "in" to NJ's brain really helped. Instead of just telling him what to do, I wrote the problems out using grids and drew arrows to the different steps. I "overexplained" the steps. We emphasized the basics: start with the right-hand column, add those two numbers, put the right-hand number of that answer here... etc.

With effort, he learned. He noodled it. It just took what it took.

Bottom line: I believe NJ will be good at math. I believe there will be days when he enjoys math. The key thing - the most important outcome to me - is that he gains a sense of mastery over each phase of the learning process. Learning to add number is important. It can be very useful in life. But learning that you CAN master things that don't come easy... that's an even more useful lesson, to me.

By the end, we were high-five-ing... and he was doing the problems all on his own.

Even though NJ hates math, he's going to learn it.

The reward this night was two cookies and a glass of milk.

The rewards later - for learning how sustained effort can lead to mastery - will be much greater.

Peace.

Thankful for Asperger's? Yes and No...

I just read in an editorial where a mother was saying how thankful she was for all kinds of stuff.

On that list she included that fact that her son has Asperger's.

I love that spirit. Love that approach. But something kind of kept me from feeling the same way.

I guess I view AS more as something to accept. Something that just is. I'm not resentful. Nor am I thankful.

I am certainly thankful for my kid, and every little swirling electron and spiritual spark that is him. But as for Asperger's itself? Meh. Take it or leave it.

When NOT to Punish an Aspergian Kid

I wanted to follow up on my somewhat Patton-esque rant about the importance of a kid staying quiet every once in awhile...

During the same vacation, we were attending an outdoor festival.

Again, perfect night... The holiday lights were illuminating St. Augustine's town square like a postcard.

The music was great - beaming live from the gazebo. But it was really, really loud.

In fact, NJ had to cover his ears. This was in the middle of a rambling semi-tantrum about wanting to go back to the hotel room, etc.

And I immediately recognized it as legitimate aural overstimulation.

Many kids on the spectrum are overwhelmed by loud noise, screaming crowds of kids, loud music and the like. I find that's especially true when other stressful stimuli are present.

In other words, when he's:

- Tired
- Hungry
- Getting hungry
- Getting tired
- Been out all day, playing in the fresh air
- Overstimulated, like after birthday parties

At these times, he's more prone to classic Aspergian problems such as sensitivity to loud noises.

So when we recognized his hearing overstimulation, we gladly grabbed him up and absconded back to the room. There, he enjoyed a soak in a big jacuzzi tub... sipped some root beer... played some video games... and eventually went to bed.

As other experts have pointed out, and I agree, it's absolutely critical NOT to punish the symptoms of Asperger's.

Then again, sometimes it's hard to distinguish between bad behavior and AS symptoms.

But as we go along, and learn, it becomes a little easier each day.

And one thing I am sure of: Laughing hilariously at one's own gross-out jokes is not a sure sign of Asperger's. Unless I, too, am an Aspergian.

Surprise, Surprise... He CAN Be Quiet for 5 Minutes

So we were halfway through this lovely weekend.

Since Wednesday evening, we've been traveling around central and north Florida. We have done the Disney thing (surprising how old-fashioned some of the Magic Kingdom rides seemed).

We've done the room service thing. (Have you noticed they ALL add an automatic tip of 20% now? How generous of them!)

We've been cavorting about St. Augustine on the coast, where the weather has been perfect. Breezy, 70s, no humidity. Just lovely for laying out by the ocean, looking up at the passing cirrus and listening to the waves crash against the rocks.

During this bit of heavenly sidetripping, NJ has gotten some nutty idea in his head that none of the regular rules apply.

And indeed, we've been staying up a little late. We've had more sugar than usual.

We've indulged the boy quite a bit. That's largely because his birthday - and his mother's - were the reasons for the trip to begin with.

But the birthday boy has gotten his thinking stuck in a rut a few times.

He wants to be back at the hotel. He wants to be playing video games.

He's bored. He wants to run around. He wants to do this and that.

He's also been very handsy lately. He's been grabbing and touching and climbing everything - statues, fences, piles of cannonballs, his mother...

Today, his negative monologue droned on as we promenaded down a wonderful seaside boardwalk on Anastasia Island.

Sometimes, I am willing to put up with this or that quirky behavior. Because I never want to punish NJ for something that might be a symptom of Asperger's.

That fear, coupled with the vaco mindset, probably broke down the normal behavior barriers we set for him. And this weekend, he's lost the ability to determine when "please stop" doesn't mean "if you want to."

Sometimes "please stop" means "you betting stop right now or get a freakin' massive timeout."

So finally, after chaffing under his monologue for about an hour straight, I had had enough.

I literally made him park it for five minutes without saying a word. He had been going on for hours, on and off, complaining, leading to low-grade anxiety for both of the adults. And frankly, wasting whatever time and money we were spending on the vacation! (I would have been less stressed out at the office.)

So that was it. I was done. I didn't care, at the moment, if I was pleasing the ghost of T. Berry Brazelton. (If he's still alive, my sincere apologies.)

And finally, he realized I was serious. Every peep he made - "But I..." Boom, I tacked another minute on there.

Sure enough, he managed to remain quiet for five minutes. We sat there. He stuck his lower lip out. We watched the ocean. We gazed at the seagulls wheeling overhead.

His mother got some headspace of her own.

And we breathed. We just sat there and didn't say anything at all.

It broke his negative monologue - including the one in his head. It was like shotgun meditation.

When the time was up, I hugged him and told him I loved him, and without any more discussion, we began walking up the boardwalk.

"Dad, I love water parks," he said as we walked toward the little water park where his mother was reading the paper.

"I'm glad, NJ. That's great. Let's go have some fun."

And we did.

And he didn't complain anymore. He played happily in the water and sand. His attitude changed. And I learned that his obnoxious diatribes were not some inevitable force of Asperger's - only to be abided bitterly to the end.

They were a kid with a little too much sugar... given a little too much latitude while on vacation... with probably not quite enough sleep... who needed to have his "reset button" pushed by some forced quiet time.

It worked. And that taught me something important. When it's time to be quiet, he can be quiet.

And that can wind up being a big favor to the adults around him... and to him, too.

As a wise friend once told me: "I can start my day over at any time."

For an Aspie kid, sometimes I believe they can use our help in starting their days over... And this, while not delicate, is perhaps one way of doing that for them.

Why We Shouldn't Lose the Aspergers Label

There's a possibility that Asperger's might disappear as an official diagnosis in 2012.

Not the Mayan Apocalypse, perhaps, but a very disturbing possibility nonetheless.

As reported here in the New York Times, the committee working on the upcoming fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) is currently weighing the question: Is Asperger's a useful diagnosis as distinct from ASD, or Autism Spectrum Disorder?

The answer to that question would appear self-evident.

The reason so many people with Aspergers seem to identify themselves as Aspergian, and with pride, is that the condition is simply not as debilitating as so-called classic autism.

Watch someone with low-functioning autism and you'll see - there is nothing in common between low-functioning autism and Aspergers.

Why, just as the world has begun to accept and understand this diagnosis, would they be dropping the term altogether?

Says Dr. Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan:

“Asperger’s means a lot of different things to different people... It’s confusing and not terribly useful.”

Upon what assumptions is she basing this opinion?

Asperger's has defined criteria as per 1994's DSM-4. Those criteria seem to be working very well.

To illustrate how apparently absurd Dr. Lord's rationale is here, try replacing the word "Aspergers" with "autism" in her comment...

You'll see it makes an even better point than her original comment did! Yet she's suggesting that we do away with Aspergers and replace it with an even more general, ill-defined term, "autism"!

The real problem isn't distinguishing between Aspergers and classic autism.

The fuzziness comes when trying to distinguish between Aspergers and PDD-NOS (Pervasive Developmental Disease - Not Otherwise Specified).

Aspergers, PDD-NOS and HFA (High Functioning Autism) are almost indistinguishable - other than the age of onset and the fact that Aspergers comes with a physical clumsiness element.

However, these three "higher functioning" conditions are quite distinguishable from so-called "classic autism" which is often accompanied by mental retardation and complete disablement.

So here's what I would propose.

Take these three conditions - Aspergers, PDD-NOS and HFA - and lump them into one "higher functioning" condition called Aspergers.

That way you have a useful distinction between Aspergers and autism.

Aspergers would remain a serious disorder that is distinguished from autism but no less diagnosable and therefore eligible for funding, government services and research money. I know that is a huge fear for some people - that separating Aspergers would decouple us from the research and services currently available for autistics. (And it's a valid fear - but one that should simply be addressed, not skirted around by lumping Aspergers in with autism for that reason alone.)

Instead, Dr. Lord's apparent solution would be to do away with the higher functioning distinction entirely, and lump every person into the Autism Spectrum.

I think that's a mistake for several reasons.

Some of my reasons are based on diagnostic clarity as I understand it.

But perhaps just as important are the cultural ramifications.

Here's what I mean...

Aspergians continue to face challenges in terms of social acceptance, in terms of prejudice and how they are perceived by the culture at large. This fact cannot be ignored - unless the doctors behind DSM are truly so myopic that they care more about one-size-fits-all diagnostic bromides than the real-world effects of their actions.

The DSM people need to realize the cultural and practical significance of the Aspergers label.

Instead of creating one mega label - Autism Spectrum Disorder - which already encompasses too many conditions to be useful, how about this...

Why not simply tweak the criteria for Aspergers to include PDD-NOS and HFA? That way you would be distinguishing between Aspergers and autism, two very distinct sets of functioning and ability?

You would have Aspergers, which would include the higher-functioning individuals.

And you would return the term "autism" to lower-functioning individuals.

This would in no way endanger Aspergers from funding, services, research or any other benefits as long as DSM-5 outlined the challenges appropriately.

Yet it would preserve the useful distinction the term Aspergers provides in the culture (and in the doctor's office).

To tell someone my son has Aspergers is one thing. To tell them my son is autistic is quite another. And the distinction is very useful in terms of telling people what to expect, what the challenges will be, what the ability level is and so forth. In other words, keeping the Aspergers label, I believe, is good for my son.

It's also just simpler - it makes more sense.

Farsighted or "High-Functioning Blind"?

To call my son autistic would, in reality, be like calling me blind.

As a farsighted person, I am "high functioning" blind, yes. But I'm blind.

Blindness and farsightedness are both forms of impaired visual acumen. So just lump me in with people who are "blind" and be done with it.

Autism and Aspergers are both impaired forms of social functioning. So just lump my son in with people who have impaired social functioning and be done with it.

Imagine if I was applying for a job as a truck driver. The interviewer asks me if I have any diagnosed medical conditions that could affect my driving.

I tell him "I am blind."

He starts. The effect sets in. His gut reaction is complete.

"But I'm HIGH-FUNCTIONING blind!"

Too late.

Blind.

Autistic.

Similarly severe terms on a cultural level at least.

I prefer to call myself farsighted. And I prefer to call my son Aspergian.

It has nothing to do with vanity - only accuracy.

I am wondering...

Would it be easier somehow if we labeled people as having Level 1 Blindness if they were totally blind. And perhaps Level 7 Blindness if they don't need corrective lenses but should probably wear them for driving?

Of course not.

And here's something important, too.

I am not saying that nearsighted people are better than blind people. But it's useful as a category to call someone nearsighted if they are nearsighted and not "high functioning blind."

I am arguing a cultural point here, too.

It matters if someone identifies a student as autistic versus Aspergian.

The whole professional teaching community makes this distinction to some degree - as do therapists worldwide.

It is a useful distinction to make.

More to come on this topic in the future.

And while I will keep an open mind (I am a fan of thinking about autism - in fact, human consciousness as one big spectrum), right now I am against losing the Aspergers label.

Please let me know your thoughts.

Peace.

4 Reasons Scouting is Good for Aspergian Kids (And a Fifth Even More Important One)

Last night was the big Halloween party for Pack 308 (the Cub Scout pack for Palm Beach County, Florida).

NJ was in rare form. Dressed as a pirate, he was making the rounds, yarring the face off anyone in his path... running from some very adorable little-girl witches. (He let himself get caught rather quickly, I noticed).

And this night was actually an important one in more ways than fun. (Mwahaha.)

Along with 21 other new Cub Scouts in Palm Beach, NJ was to receive his Bobcat Badge.

This little powder-blue patch features, as you might imagine, a small bobcat embroidered into it. It's the first patch you earn in Scouting. And as his primary scout parent, I pinned his patch on his chest - upside down, as is the rule. I then informed him that he could turn it right-side up, after he did one good deed.

Receiving their badges at the same ceremony was his best friend Darren. Two of his other more casual buddies got theirs, too.

And it was just another chance to get all the fellows together, in proximity.

Mere proximity might seem inconsequential. ("I need my boy to have FRIENDS, dammit. And LOTS of close ones! Thousands would be good. But I'll settle for a dozen intimate pals.")

But to me, consistent, repeated proximity even to peer-aged *potential* friends is vital... especially potential friends with similar challenges, such as ADHD, High Functioning Autism, etc. If they're not around other kids, how will they EVER have a chance to form even the most casual of bonds?

And to me, a casual bond is better than none. It's all about degrees. And any degree is good. And you gotta start somewhere.

Which brings me to why I think scouting (Brownies, Girl Scouts, Boy Scouts, Cub Scouts, Sea Scouts, you name it) can be extremely beneficial to some Aspergians.

1) Proximity: Scouting gets your kid around other kids in a semi-intimate setting that is almost all about fun. NJ's "Den" - the smallest organized group within the Cub Scout structure - has about six other boys in it. It gets him around these guys, and in doing so, he's formed some casual new buddies whom he's run around with, wrestled with and joked with. Scouting also gives them something in common - automatically! NJ's buddy Darren said to him when they met at their first meeting: "Hey, Scouting buddy!" (I LOVE the way Aspergians communicate sometimes...)

2) The right blend of predictability and fun... Scouting features a very well defined system where scouts know what's expected... they know the rules. They know what they need to do to earn the various rewards (badges, belt loops, etc.). And there's also ceremonies starting meetings, etc. It suits the desire a lot of Aspergians have for order, predictability, etc.

3) It appeals to their innate sense of justice and doing what's right... Many Aspergians have a very well defined sense of right and wrong, of what is just and what isn't. There's a nice moral component to scouting that isn't religious or dogmatic, but based on basic love for your fellow human, and for yourself.

4) It gets 'em away from the video games! This one is self explanatory, but basically scouting provides a lot of opportunities for outdoor activity. And when they play football, etc., it's very casual and fun. At the end of the Den soccer match, each boy got to line up and kick the ball in the goal at least once! Very cool.

So... Now that NJ's a Bobcat, he's got one more thing in common with all the other boys in his Den. Him and Darren can now compare each other's badges, climb the ranks and and go through the trials, tribulations and triumphs together.

Their bond will, hopefully, deepen through the experience. As will his bond with another important person who I hope he continues to bond with... another Bobcat, as it turns out.

I'm talking about his Daddy, of course. Yours truly. Proud former member of Den 13, Pack 301... Sonoma, California, 1976-78.

Peace.

Kid Says the Darndest Things...

Funny things NJ has said lately...

"Because I didn't want you to miss it!" (said earnestly when I asked why he had to say "Look, Dad, there goes a pretty girl!" really loud...)

"Ah, let's just take the car, like a couple of real Livingston men..." (when I asked him if we should walk to the beach or drive...)

"Did you hear about the gold fish that went bankrupt? Now he's a bronze fish."

"Good, but my pockets are full of sand..." (reply to a couple nice ladies who asked how he was doing when we were leaving the beach)

"Take the word 'egg' out..." (brilliant suggestion when I was writing about my lack of enthusiasm for egg nog on Facebook... it made my update post about 10 times funnier to call it "nog" instead of "egg nog")

Teacher Conference... Ugh? Nah!

So I was kinda wondering... what would NJ's new first grade teacher have to say at our first "official" meeting?

Last week, she'd sent home a note with something about him not meeting his grade-level expectations for paying attention and group cooperation.

Let the games begin. Making matters worse was the fact that I was heading into this meeting on one cup of coffee.

Just not fair.

I had already prepared myself - don't react, no matter what. Take a breath and respond. Explain what Aspergers is. Patiently listen. Ignore urge to snap pencil in hand and breath angrily through the nose.

Here's what really happened.

NJ's mother and I came into the classroom to meet his teacher. He went over to the reading area and grabbed a book, asking the teacher politely if he could read one of the "big books" on the top shelf.

And Mrs. P began to tell us about NJ's problems...

- He was reading at least two grades above his class

- He was doing GREAT at math! This was shocking because he says he hates math all the time

- He was "interacting socially very well" - an opinion that was shared by the school's ESE coordinator, and his other teacher - this was unsolicited by the way

- He did have a bad day on Monday

In fact, there was nothing too negative - like, at all.

Of course, there were usual observations you would have expected. He's opinionated. He has an attitude sometimes. He did have to have a "quiet lunch" for three days in a row. That's where you can't talk during lunch. Because he'd been disrespectful. But since then, he'd shaped up and was doing fine again.

As we left the class, NJ had fallen into conversation with Megan and Darren, the two kids HE calls his friends... I say HE because I really care more about who he thinks of as friends, and why he thinks of them as friends, than who I think are his friends. (There is at least one boy I think he should like, but he just doesn't seem to agree.)

Again, the lesson is: Try to avoid expectations, good or bad.

But it's just getting more and more difficult. Because I'm starting to expect good things.

Can that really be bad?

Are Aspergians Natural Salesmen?

This weekend, NJ was voluntold to sell popcorn for the Cub Scouts at the local mall here in sunny (alright, sweating and stinking) Boynton Beach, Florida.

I was wondering how he would do.

I gave NJ a 1-minute pep talk and told him what to say: "Hi, would you like to buy some popcorn to benefit the scouts?"

He repeated it back to me a couple times. I told him the prices. And basically, he grabbed a couple of bags of "product" and darted out into the crowd of mall lopers.

I watched in stunned amazement - and amusement.

NJ would literally walk right up in front of a whole group of people - no matter their age, nationality or scent - and give them his pitch.

He developed this totally on his own, and on the fly.

Sometimes people would keep walking, and in those cases, he would walk backwards. He would continue talking to them about how fresh and great the popcorn was. It was only one dollar, etc. Sometimes he'd have to give up.

I kept reminding him to say "thanks, anyway," when this happened.

But more than half the time, I'd say, they were absolutely bowled over by this kid.

So self possessed, so persistent. So polite, and knowledgeable!

Yes, yes. He's my son, I would say.

One lady followed him back to the table to give a donation. She didn't even like or want the popcorn, but she was so bowled over by this kid, she had to give something.

"You are the best sales person I have ever met. Period! And I mean that. This kid is amazing. What's your name?" Etc. She went on and on. And I could tell she was a tough New York dame from the old school. She didn't seem one to hand out compliments lightly.

But frankly, lots of people had this same reaction. They were practically throwing money at the lad and smiling as they did it.

I believe it was partially his AS traits that helped him succeed:

- Persistence (er, perseverance)

- Lack of reading social cues (he didn't sense when people were trying to blow him off... he just kept on going... and they were eventually blown away by his dogged persistence)

- Intelligence (he had all the facts down cold, the prices, the products, the reason for the sale itself, etc.)

- Politeness (NJ is very polite, and a little formal-sounding sometimes in his expressions, adding to that "polite" sense)

- Really damn cute

I think these traits probably describe a lot of Aspergian kids.

Sure, they might seem a little eccentric, but as long as we imbue them with confidence, they'll have the chance to surprise. Some are more high-functioning than others, I understand. But the question isn't how high functioning is my child - it's how high functioning can he be? And in some cases, I am sure it's higher than "average" kids.

NJ continues to surprise whenever I give him the chance.

All I need to do is keep loving him (impossible not to do)... keep believing in him... and staying out of his way!

If salesmanship is a huge part of success in life, he's got a good chance at succeeding... at whatever he chooses to do.

Peace.

A Tiny Ocean

Sundown in South Florida.

Playground at the Unitarian Church.

Sand, wooden play set, plastic

Yellow slide.

An unfurled plastic hose drug across

the sand, and two perfect, small humans

Filling a watering can, pouring, filling.

Their limbs slender and tan, graceful.

My boy and her girl, working together,

Practicing for something encoded in

their bones. Talking innocence so

pure and magical, that no adult ear

could decipher the true meaning -

just the diction, the dry grammar, the

syntax. But the swirling and electric

connection, the funnel to the beyond,

was theirs and theirs alone.

His hand, her hand, both on the

handle of the green, plastic watering can.

Pouring water into sand, forming a tiny ocean,

and me raising a finger to wipe it dry.

I get jokes - and so does he

I have heard that some Aspergians don't have senses of humor.

I think this claim is greatly exaggerated.  At least in many cases.

I suspect most if not all Aspergians have a sense of humor.  But it's likely to be very dry, and very... well... quirky.

This, for me, is an absolute dream sent down from Heaven.

I have always loved absurdist, dry humor.  Monty Python, Michael Showalter, Steve Martin.  Their brands of humor always have gotten me deep.  Of course, I'm also a huge fan of Benny Hill and flat-out idiots like the Cable Guy.  I'm a comedy omnivore - with the exception of Carrot Top.  How ironic is that?

Anyway.

NJ's new thing is to come strutting into the living room with his pants hiked way up and ask: "Dad?  Are my paaaants tooo hiiigh?"  That's the whole joke.

It is hilariously ridiculous - and I laugh every single time.

He has a whole line of jokes, from dry, acerbic witticisms to classic knock-knock.

Tonight he told this joke: Why did Patrick refurbish his house in solid gold?  Because his teacher told him he needed to do a lot of homework!

Not funny - unless it's being delivered by a six-year-old Aspergian who himself thinks it's funny.

Today I was expressing how irritated I was with the fact that NJ had been complaining since I picked him up from school.  He lets me prattle on for a minute, then sits silently.  Then he goes: "You say I'm complaining.  But who's doing all the complaining now?  Huh-huh-HUUUUH?"

Now that's some funny stuff, and against my better judgement - I couldn't help laughing.

My point is, your Aspie almost certainly has a sense of humor.  Perhaps its a bit buried, or a bit quirky, or just very, very dry.  But I bet it's there.

And I certainly think it's worth looking for.

Peace.

Keeping to my word

I preach to NJ all the time: Effort is all we care about.  You try hard, and leave the outcome up to the universe.

You cannot control the outcome - only the input.

So.

What does he do but go and win his very first marbles match this weekend.  The first one he played in.  And he won it at the Pack 308 Cub Scouts Fall Classic Tournament here in Palm Beach County.

What a hoot.

He began by winning the lag, which you do to determine who goes first.  Like the lag in pool, you have to shoot the ball and see who gets closest to the line.  NJ got closest. 

So he went first.  And he gets two marbles with his first shot, and he gets his shooter back.

From there, he did really well.  And his attitude was great.  And he played by the rules.

When he won, we wanted to jump for joy.  We wanted to scream.  

But all we did was walk up to him, give him a hug and tell him he made a great effort.  We did make sure he knew that he had won the match, but that was all.  The rest was hot dogs, conversations and meeting a few new friends.

Consider the challenges Aspergians face when it comes to such things:

- Taking turns

- Fine motor skills

- Understanding instructions

- Concentration and staying on task

- Operating in crowds (there were dozens of kids in the gym)

And consider that an Aspergian won his match on Saturday.

It was, to my mind, something to write home about.  

The other great thing was how the Scout leaders treated the situation.  Although they had established a rule that parents must stay behind a line well away from the competitors, the organizers allowed me to occasionally jump in and help when NJ needed a gentle push in the right direction.

Frankly, I didn't really need to do much at all.  I basically stood about 20 feet away and watched as he participated and did a wonderful job all by himself.

At one point, the chief organizer, Dennis, came over and quietly but firmly told me it was okay to stay with him if I wanted.

I thanked him.  And I kept my place, well away from the action.

That was NJ's business.  And I am proud to report that he gave his best effort.

I'm also happy to report that the outcome was good, too.  

Peace.

Relaxation time...

This weekend, we took NJ to the Florida Keys for some R&R.

It was well deserved, and apparently, needed.

But 'twas not all a bed of roses.  At least, not at first.

After a very long drive, we got to the hotel and decided to take a walk.  We were looking for the house of Shel Silverstein, the great writer of children's books and poems.  As we walked along, NJ started complaining.  He wanted to do this, he wanted to do that.  Why did we have to walk around when he wanted to do something else, etc.

Well, I stopped him in his tracks.  I told him not to talk back.  And I sat him down for a three-minute timeout. 

He started yapping during the timeout, and I threatened to add another three minutes.

He finally shut up. 

And after that, I must say, the rest of the weekend was a dream.

It was nice to be traveling with family, including NJ's mother, my nephew and sister, and brother in law.

And just hanging out around the pool and watching him with family was a tremendous treat.  I found it very soothing.  My sister Rose, who's about 13 years older than me, has given me some of my greatest childhood memories.

One night when I was five, I kept waking her up and asking for orange juice.  I must have asked her three or four times.  She kept getting it for me.  I couldn't believe it.  She was always very good at coming into MY world when I was a kid, and trying to understand what I was going through.

Well, this weekend, she gave me the treat of watching her do the same thing... but with NJ.

She's so good at entering the kid's world and not patronizing him.  In the process, she somehow manages to maintain her adult status, but she truly just has a neat way of connecting with kids that I think says something about the depth of her character, wisdom and curiosity about the world.

NJ clearly ate up every minute of it.  

And it wasn't just that she bought him the $10 pirate soap that I refused to buy him!

It was her asking him questions about volcanoes, and watching him build sand castles for two hours, and talking to him about TV shows, and boats, and pirates and fish.  NJ's Uncle Al and cousin Tim also took him under wing at various times.

And I was just very grateful to have him around family.  People that accept him for exactly who he is, right now.  Not after years of therapy.  Not after he becomes "normal." 

Not because of his great intellect, or some accomplishment or other.

But just because he's their cousin, their nephew, their family... their loved one.

I think that pure, total acceptance must underly every interaction I have with NJ.  Even when I'm correcting him, or punishing him with the dreaded time-out... I must know, with absolute certainty, that it all comes from a loving place, a place of total acceptance of who he is.

Kids can tell.  And Aspergian kids can really tell, I am convinced, perhaps more than NTs.

So always knowing where I'm coming from is of utmost importance.

Another interesting lesson from the weekend...

This one also had to do with acceptance.  But in this case, it was NOT accepting something that led to positive results.

Basically, don't accept it when a kid doesn't try something.

I can accept that NJ might not be able to do something.

But I won't accept him not trying, not giving effort.  

We try to praise effort, and accept outcomes.  

I think that's a good mantra.

In this case, NJ didn't want to try riding on the tandem bike.  He was having a hard time getting up on it, and he kept feeling like he was going to fall off every time the thing jostled to one side or the other.  

He tried getting down and telling me he couldn't do it.  

But I knew damn well he could.

"NJ, get back on there and put your feet on the pedals.  Just keep your feet on the pedals.  You can pedal if you want to, but you don't have to."

He would get back on, and kinda perch there for a moment.  Then try to hop off.  At one point, he got back on for a moment, and I just started riding away, down the street toward Duval. 

His mother tailed us, making sure he didn't do a face-plant or anything.

But after about five seconds, he realized that he COULD do it.  In fact, he started having a ball!  He was pedaling, talking, observing and enjoying the ride through Key West like the old salty dog he is. 

We never drove the car the whole weekend.

The little Aspergian boy who "couldn't" ride the bicycle proved otherwise. 

I praised his effort - not his success. 

And while his success didn't surprise me, it seemed to surprise him.

And I suspect it won't be the first time.

Peace.

The value of never giving up

I will be honest, and tell on myself.

There have been times when I've wondered if putting NJ in various social situations was even worth it. We tried T-ball, and that didn't go very well. Of course that was before we had a diagnosis, and before NJ turned 4!

We've asked him if he wants to try soccer. No go.

He used to balk at the idea of a play date (no more).

But thank goodness we never gave up. We have just continued to gently ask if he would be interested in trying various things. And we've accepted when he flat out says no.

So we were delighted two weeks ago when he came home from 1st grade with a flier for Cub Scouts!

He was not only interested - he had taken the initiative.

So we went to the first couple of preliminary meetings. And he sat there and did very well for most of it. But what was awesome was when he leaned back into me, and whispered during one of the presentations:

"Dad, I think Cub Scouts is really exciting."

I whispered back that I agreed, that I could wait to do this with him.

He whispered back a few more things that made me want to rip my own head off with joy, and go bowling with it. And I actually got teary-eyed.

This happens occasionally, and almost always when I see him making - or even attempting to make - a real social connection, with an individual, group, it doesn't matter.

As an added bonus, his friend Darren (also on the spectrum, very mildly) wound up in NJ's Den through some shameless vote-rigging. His friend Ravi also wound up in his group, as did another friendly acquaintance named Tyler.

Who knows where these guys are headed, how long their friendship will last. I recently got "friended" by an old buddy I met at Wilson Elementary School in California, oh, about 30 years ago. Of course I wouldn't have dreamed we would remain friends our whole lives. I didn't even know what a whole life meant back then.

But thanks to NJ's new foray into the Scouts, I am wondering if he might wind up with a lifelong chum after all.

Never give up. Never settle for isolation. Just keep trying to put your kid into situations where he can succeed. It will happen. It will.

Peace.

Catching Butterflies

Today, NJ caught two butterflies in his net.

He ran along the edge of the lake behind his mother's house.  He swooped and darted.  He ran into the water's edge.  He ran back up on the grassy shore.  

He caught two butterflies and watched them.

I think they were trying to hump, actually.

And then, just like that, they took off.

First Day of School

Well, he survived.

And so did his parents.

Today was NJ's first day of first grade - real school.

He's got science lab, social studies, the whole thing.

And... he's riding the bus.

He apparently had a relatively stress-free day in class.  It helped that one of his buddies, Derrick, is in the same class.  There is also apparently a pretty girl named Christina ("I liked her name, but she didn't sit at my table," NJ told me wistfully... Yeah, get used to it kid.  That's why you gotta walk around a little bit and... visit other tables!)

Anyway.

He also managed to navigate taking the bus for the first time ever, by himself.  And there were transfers both going and returning to the bus stop!

No problem for NJ.

Even though Mommy tried to pick him up in the wrong line and, after a minor panic attack, figured out that the bus dropped off at a different traffic circle!

Anyway, all's well that ends well.

And today his executive functioning seemed to be adequate, if not superb.

More to come.

Peace.

Aspies and Compassion... Some Surprising "Data"

One of the supposed traits of Asperger's folk is their lack of ability in the area of compassion.

But there's a growing sense that many aspies are, in fact, almost overly compassionate.  It's just that they sometimes lack the right words or appropriate gestures to confidently relate their sense of feeling for someone else.

Case in point...

Today we were at the beach.  NJ was riding some serious rip curls tearing down the eastern coast of South Florida.  Afterwards, we showered at the beach showers and began toweling off.  A lady walked up to the shower and attempted to turn it on using the metal button.  

She couldn't get it to fire up.  And the thing is kind of hard to operate.  You really have to lean into this button for some reason.

NJ noticed this and immediately - without thinking about it - walked over and said: "I'll help."

She stood aside as this little six-year-old pushed the button and then held it on for her while she rinse the sand off!

"What a little gentleman," she said.  Her friends seemed very amused, too, at the thoughtfulness of this little boy.  

On our walk to the bus stop, NJ noticed a plastic grocery bag on the ground near the beach pavilion.  He picked it up, without being prompted, and ran over to throw it in the trash.  A friendly rogues gallery of Florida beach bums stood by watching, and all thanked him as he returned to me.

It seems that wherever he goes, he is dialed in - in his own way - to what's going on around him.

The key to me as a parent is to notice those connections and to encourage him to continue with them. 

Part of making your way in society is finding your niche.  

Being helpful, pitching in without being asked... that's a good niche.

Now, you can take that too far, of course!  

You don't want a codependent little guy running around trying to save everyone.

But I see signs that NJ is brimming with compassion - and they're in his actions as much, or more, than in his words.

That's where they count, anyway.

Peace.

NJ Finds an Aspie Role Model?

So I've spent a few posts gushing about super cool people with AS.

Here's why I think it's important to keep telling these stories, and sharing them with our aspie kids.

I was showing NJ's mother the ESPN video about Clay Marzo - the world-beating pro surfer whose intensely focused personality has rocketed him to the top of his sport.

While she was watching, NJ ambled over to check it out.

He watched Clay ripping up these massive waves off the shores of Maui.

Even though NJ isn't a surfer - yet - he was clearly impressed.

I told him the young man's name.

And that was about all. We haven't sat NJ down and talked about what Asperger's means or anything. Seems like too heavy of a concept for right now.

Anyway, later we were swimming in the pool and NJ starts balancing with one foot on his floating pool mat. He was telling me, "Watch me, Daddy." He then went through a series of "tricks"... closing his eyes, no hands, the whole bit.

I told him I was going surfing this weekend (they give free lessons in Deerfield Beach, near my house).

And I told him if I liked it, I would start taking him out with me.

"Like Clay Marzo!" he said.

Exactly, I said, surprised he remembered (when will I stop being surprised at amazing things NJ does?).

I told him that Clay and him shared similar personalities in a lot of ways.

"Did he have to go to Therapy Spot?" he asked, referring to the play group he attends, often under protest.

"He did," I fudged. "He had to do all the testing and all that stuff too. He found something he loves to do, and he's doing it. You can do the same thing."

I know I was treading a fine line. You don't want to set up unrealistic expectations.

But again, I've already given NJ permission to fail.

But I won't give him permission to not try.

I love him too much for that.

The Aspie "Babe Parade" Continues...

Not long ago, a young woman named Heather made it into the final five on America's Next Top Model.

Apparently, aspies have a knack for winning reality TV talent contests, or at least doing very well in them.

Heather is on the spectrum - the beautiful end.

Her story captivated much of America for weeks as she ascended the ladder of competition on the televised docudrama. 

I'm sensing a trend here.  As people are being diagnosed with Aspergers more frequently, and at a younger age, we're very likely to meet countless Heathers in the future.

Isn't it pretty to think so?

Another Aspie Hero

This is getting ridiculous.

I think I'm going to start a special section on this blog called:

The Aspie Heroes Gallery

If I do, one of the names will likely be Scott James.

He's a young singer from England who is apparently very, very talented.

So talented that he caused Simon Cowell's jaw to drop in awe.

Here's a sample of this guy singing - it'll knock your socks off.

If you know of any other people to add to this list, please send me the info!

Permission to Dream Big... Granted

I was dropping NJ off this morning at his therapy summer camp.  Afterwards, I bumped into a couple moms of other boys attending the camp.

We had a wide-ranging conversation about our kids and their schools.  NJ is classmates with Jason, another kid in his camp class.  They both attend a local magnet Montessori program and so far, so good.

Anyway, getting off the topic here...

What really got my ears perked up was Kathy's story about an emerging professional surfer on the world scene.

This kid's name is Clay Marzo (pictured at right).

Perhaps the greatest pro surfer of all times, Kelly Slater, says nobody in Clay's under-20 age bracket even comes close to Clay's talent, creativity and instincts riding the waves.

That's akin to Hank Aaron heaping praise upon a Major League rookie. 

Clay doesn't do a lot of talking, because he generally talks only when he's got something to say.  Nor does he bother much with trying to be popular, although his tousled blond hair, blue eyes and athletic surfer's physique are apparently appealing to the fairer sex.

The 19-year-old Hawaiian native could be the next big star to emerge from the world or professional surfing.  He already has a slew of endorsements.  He's been recently featured on ESPN and several magazines.

Clay's story is sweeping the country right now.

And two years ago, Clay was diagnosed with Asperger's.

I know this is an emerging trend - great stories of aspies absolutely kicking butt in life "despite their disability."  And I have read message board posts from aspies and their parents discouraging the idea of pointing to aspie heroes as role models - because not every aspie or spectrum person can discover the theory of relativity... or found Microsoft... or whatever.

But in this case, it appears to be Clay's personality - his classic aspie personality - that is leading to his success.

He apparently can ride the waves for eight hours straight.  He has peerless focus during competitions.  His riding style adheres to no formalities, and appears completely original and nonconformist.

To me these things are all potential benefits.  

And they remind me of the fact that Asperger's is a diagnosis, not a sentence.  

There's no reason to think that an aspie can't do any damn thing he wants to do.  If he wants to try, let him try.  If he fails, well, he fails.  What is so horrible about failing every once in awhile?  Nothing ventured, nothing gained, and this is especially true when we're trying to teach any kid how to take intelligent risks.

I would rather err on the side of risk-taking, and teaching him that he is not his failure or success... but his character and his effort.

Knowing that NJ will likely fail at many things (we all do), I recently sat him down and looked him square in the eye.  He had had a hard day at school.  He hadn't wanted to do his math, because it was "hard," he said.

But his actual math ability is significantly advanced, according to his IQ tests.  Suspecting that he didn't want to do his math because it wasn't easy, and he was afraid of failing, I looked him right in the eye and said...

"Daddy gives you permission to fail."

I felt really good saying it for some reason.  And I don't even really know where it came from.

I just wanted him to know that he can try anything and failing is acceptable.  I did tell him that saying "I can't do it" before you've tried is unacceptable. 

My point being, I think it's okay to point to guys like Clay as role models, and to let our guys and girls dream big.

We simply don't know what they can do with the right psychological foundation, lots of love and some good therapy.

They might not turn out to be the next Clay Marzo... Bill Gates... or Albert Einstein... 

But they have a better chance of becoming the best version of themselves in the end...

Peace.

A Dangerous River of Denial

I am a fan of fringe thinking.   I love the American cult of free thought.

The Constitution's First Amendment was created to protect fringe thinking, even dangerous thinking.  So I would never argue with someone's right to think or express whatever happens to be on their mind.

But as my good friend Bob M. likes to say, "Everyone is entitled to their own wrong opinion."

Case in point, the people who seem to deny the very existence of autism, or the spectrum itself.

In the comments following a recent post at the London Guardian, somebody calling himself Bobplasterer was bizarrely persevering in his autism denial.  He didn't come off as an idiot, or particularly mean.  He just came off as frighteningly ignorant.

His main line of argument was that this whole "autism thing" is merely another fake problem manufactured by the global conspiracy of Big Pharma.  

The "Drug Companies" are at it again, he suggests.  

Today, of course, it's called big business. Where did all these autistic people come from? If they really exist, they must have been specially created.

Wow, Bob.  Buddy.  That calls for my patented... "Triple Dude."

So without further ado...

Dude.  Dude.  Dude.  Are you freaking SERIOUS?

First of all, the article was about an aspie, not a classic autistic.  There are no drugs for Asperger's.  It would be nice if there were, however.  In this case, I am hoping that Bob the Plasterer (versus Bob the Plumber, I suppose) is right, and the drug companies are indeed "conspiring" to create a drug to help aspies function better socially.

Conspire away, ye drug overlords!  

Meanwhile, I don't know whether to laugh, cry or simply ignore people like Bob, who so often show up on message boards. 

They have a weird edge about them, something that gives me the same feeling I get when presented with subtle (or not so subtle) forms of racism, sexism or gay bashing.

Intolerance is almost always directly linked to ignorance.

We fear the unknown.

It makes sense for guys like Bob to fear the unknown, I suppose.  

But it doesn't make sense for them to make speeches on message boards about something they so clearly know nothing about.

Getting back to the article, it was an interesting one, and thought provoking.

The title: Autism: Equality's Last Frontier.

I agree fully that we're going to need to make space for spectrum folks.  There's so much for society to gain from this acceptance, just as there was to gain from the acceptance of other minority groups.

There was a time when people thought a certain subgroup of our population didn't deserve "special treatment" - such as access to top schools, public water fountains, and good seats on public transportation.  

There was a time when people questioned the need to address the systematic oppression of such people, educationally, socially and politically.

Without the recognition of the need for acceptance, we would not have our fine American President... nor would we likely have some of our finest scholars... soldiers... writers... friends... and family members.

So I believe it's time to start viewing aspies the way Nadine Stavonina de Montagnac suggested in her article: as an amazing subgroup of our population whose potential has yet to be realized, or even properly acknowledged.

This can help us set the agenda for the unleashing of that potential, in whatever direction it may take going forward.

We need a term for this, and I am suggesting neurominority.

It's time for society to realize that autism exists... that Asperger's is real... and that it's in the interest of ourselves and our posterity to ensure that this group's vast potential is realized and brought to the fore.

Peace.

More Similar than Different

It's so easy to assume that aspies are "fundamentally different" somehow.

And perhaps there's a little truth in that.

But I am starting to realize that these kinds of generalizations are simply that - generalizations.

And as such, they are best taken with a reasonably large grain of salt.

I just spent some time in Baltimore on assignment for work.  In the evenings, I was able to visit some old friends, and their kids.  

It was a delight visiting with them, and catching up on Ye Olden Tymes.  

I had forgotten "therapeutic screaming" atop that hill on the outskirts of campus... 

Teaching my old roommate's nephews how to swear without really swearing... 

Watching a strange college-newspaper buddy eat a montecristo sandwich at 2 a.m. back in '92.

Various scenes of unwarranted nudity with the rugby team...

But the greatest joy of my visit was interacting with their kids.  

He's about 2 and she's almost 5.  And they're both amazingly cute, bright and inquisitive.

I took notice of what they were noticing around them.  They were picking up leaves for awhile, and pressing them into water and making leaf prints on the pavement of the patio.  They were picking up little pieces of dirt and who-knows-what and presenting them to us, with their commentary as to what these things might be.  (Usually, it was "bug" for the little guy.)

We had an absolute ball.

And not once during all of this did either of them ask me how I was doing, or say good morning, or even say hello to me.  They said goodbye after prompting.  All "normal" stuff.

Of course, NJ didn't used to ask me how I was doing when he was their age.  

Nor did he say hello to me when he was 2 or almost 5.  And it's very easy to attribute these things to Asperger's.  

Yet... and yet...

It probably wasn't Asperger's.  At least based on what I have been observing in other children his age, of late.

In fact, he probably wasn't asking me about my day, etc., because he was too young to give a hoot.  I'm not pretending that he wasn't displaying differences in the way he interacted with his peers, to be sure.  But the fact that he wasn't debriefing me about my day at the office, or taking notes while I talked about my car troubles, probably was not a sign of impending AS-related disaster.

Besides, NJ is now six years old.  I have heard that the effects of Asperger's often diminish with age.  I'm am already seeing some truth to that, especially when it comes to overt expressions of compassion for others.

This morning, I awoke and asked him how he was doing.  

He said he was good, and added: "How are you doing, Dad?"

I told him I was doing good.  But he had no idea how much his question affected my answer.

In fact, he's been asking me to read with him, to look at his games, to do stuff with him... and he's doing it all the time now.  He invites me to stay over at his mother's house (egad!), and generally shows signs of a compassionate, caring kid all around.

Yesterday, he even shared a gummy candy without prompting.

He's come so far, thanks to getting a little older, and thanks to a lot of good play therapy.

In fact, I have come to understand that aspies are indeed more similar to other kids than different.  It's just that differences stand out more than similarities.  

Also, some of the differences are advantages.  

Let's keep the candle of faith burning that they'll be able to turn those advantages into happy, successful, fulfilling lives.

Peace.

Snippets of Love

I just got off the horn with NJ's mother.

They were in the car, driving to a coordinating meeting for a non-profit that helps out homeless families by giving them shelter and rehabbing them back into the mainstream.  (I have a sister in California who worked for an outfit called COTS that did the same thing.)

During the update call with mom, I could hear NJ in the background.  He was trying to perform some trick with a pen, and the one he was using in the back seat (ahem) somehow broke.

As usual, he was on a mission.  And he wasn't happy about the broken pen.

But the important thing was where they were driving.

The non-profit is something Mel got involved with.  She's a fundraiser by profession, and decided to take her considerable skills to this organization.

One of the things they say about some aspies is that they don't have compassion for others.

I disagree.

Lately, NJ has been noticing collection buckets, signs and advertising for random groups that help homeless children (you often see such signs at grocery stores).  

He regularly comments on them.  "Aww.  I think we should build a facility to help homeless children and help them have food, shelter and computers."

On NJ's Maslow's hierarchy, computers come just after food and shelter (or sometimes before!).

He even drew out a map of such a facility the other day with colored pens, showing the housing, the cafeteria, etc.

My point is, it would be so easy to assume he couldn't care less.  

And not even to try to open his eyes to the plight of the less fortunate.   Hey, kids with AS don't care about others, right?  

Don't believe the hype.

Again, this reminds me of the importance of keeping in mind that each kid is unique, and you can't assume anything.

Sometimes, as with any good parent, you just try to lead the way... and whether they follow or not, at least you're still doing the right thing anyway.

In this case, it's his mommy who's doing the leading.  I'm just doing the watching.  And I'm impressed.

Peace.  Happy Sunday.

Considering the GF Diet...

This week I'm in Vancouver, attending "an important business function."

At the "post-meeting barbecue get-together," I was reminiscing with the wife of a friend and colleague of mine.  

We covered the usual subjects: Her undying love of her husband... Elvis Costello's ever-growing oeuvre... what makes a happy relationship...

And then the subject of NJ and Asperger's came up.  

She immediately informed me of a family member with autism, a young lad of about 11 from what I could tell.

Then she asked pointedly: "You're doing the diet, right?"

I knew what she was talking about, of course.  

She was referring to that rather intimidating idea of the Gluten-Free Diet, or GF Diet (basically, no breads).  Or its even creepier cousin, the dreaded Gluten-Free/Casein-Free Diet, or GFCF (basically, no breads or dairy). 

She was very insistent that we implement the diet right away - and completely and forever, amen.  Like others I've met who have tried this diet themselves or with a loved one, she was passionate.

Her story about the young family member moved well, and it came from the heart.  

The kid started the GF diet, and three weeks later, in the parlance of old-time preachers, he "walked again."  The simple deletion of certain (often pleasurable) items from the diet had affected a transformation.

The kid's original symptoms had included: Not talking, period.  Extreme sensitivity to all kinds of stimuli.  Tantrums.  And I'm assuming what must have been the normal challenges with self-care stuff.

After just a few weeks of going without gluten, she said, he began functioning much better.  He would suddenly greet her on her arrival at their house.  She had phone conversations with him (something NJ still isn't great at).  Really, it was a transformation... in mere weeks!

This was the second example I've heard from close friends of a kid practically going "neurotypical" from this diet.

Here's the problem: You can't do this halfway.  You must cut out gluten altogether.  And that's hard, considering it's in almost all good breads, pastries, doughs, fried dough... fried dough again... cereals, flatbreads, some tortillas, maybe a little malted barley flour, pasta, wheat crackers, malt vinegar and NJ's favorite, sprinkle donuts.

Another problem: I wouldn't be comfortable enjoying all these delicious things in front of any child who couldn't have them.

So... that would require a pretty much non-GF diet for me, too.  A scary prospect when you're nearly 40 and you've never known anything but a gluten-friendly diet.

NJ's mother and I have talked about this possibility before.  

We've even done some practice runs, cutting back on gluten just to see what it might be like.

After this discussion, I'm tempted to at least try it for one month.  If there's no difference, then maybe we can bag it.

If there is a noticeable difference, then obviously, we'll do what we have to do.

Even if it involves the removal of sprinkle donuts from our diet as well.

Peace.

Yes, Therapy Can Help Aspies of All Ages

I've written in this space before about a wonderful old grandmother from New England...

Who happened to be totally full of crap.

She sweetly informed me one day at the Barnes & Noble that her grandson was an aspie.  She loved him more than anything, little dear.  Oh, poor Billy.  He's a little guy.  Never grew over 5 feet tall, even though he's already in junior year of high school.

He's so "special."  Aww.  

And all that stuff's fine, especially from a grandma.  Even though I can't stand people getting all condescending toward aspies and autistics in general. 

But then she drops this bomb, after hearing that my son was doing behavioral therapy and group learning:

"All that therapy stuff, and the play groups, none of it make any difference."

Apparently, Billy's mother - this woman's daughter - thought differently.  

And so do I.

Fact is, I've noticed NJ making huge strides - quantum leaps in behavior - since starting behavioral therapy.  I subscribe to the idea that about 85% of what aspies don't pick up intuitively - vocal nuance, eye contact, etc. - can be patiently learned.

And the place to learn that is in therapy, and working caring teachers and parents with an agenda - to teach the kid the stuff he needs to know to be successful.

This amazing report in Scientific American confirms this view - and actually is startling.  Because it seems to refute the universally accepted notion that aspies lack the capacity for Theory of Mind - the ability to intuit what others are thinking and feeling.

So we'll continue with therapy, thank you very much.  Even though NJ doesn't always enjoy going to a place where there's no SpongeBob and no video games and no pool, we're helping him build the foundation for what I am convinced will be a wonderful, fascinating and, yes, challenging life.

Peace.

Keeping It FUN

One thing I've noticed, my son doesn't respond too well when he feels I'm asking him to "practice" some skill... just for the sake of practicing.

He doesn't get it.  It's too abstract.  

And while I still insist that he practices playing catch with me, I'm learning to "trick" him into various "occupational therapy"-like activities!

What fun.  

But seriously, here's an example.  I used to ask him to practice playing beach-ball volleyball with me in the pool.  He would grunt... "Okay, but just for a few minutes."  

We would hit back and forth a few times, and then that was it.  He was onto something else.

But now I turn it into a game.  Tonight was a great example.  "NJ, here's the deal.  If we get four hits in a row, we get a point.  If we get less, the other team gets a point."

For some reason, we named our team: The Violent Video Games, and the other team (the imaginary team we were playing against) we called the Holly Hill Gang.  (Please don't ask why.)

So we began playing, and keeping score.  First team to 7 wins, etc.  We must have played non-stop for a half hour.  This was unprecedented for any type of ball game with NJ.  Normally, he just doesn't dig it.

It was a fantastic step.  

He didn't even realize he was sharpening his coordination, and learning how to better control his body.  

I think this is something good to keep in mind with our kids, regardless.  We always know what our motives are, but it doesn't mean the kid has to know.  If he thinks it's a game, so much the better.  

Whatever it takes, man.  

By the way, the good guys won tonight.  Go Violent Video Games!  (The pool volleyball team, that is.)

Peace.

That Aspie Sense of Humor

The report read:

"NJ began laughing at something during the test.  We were reading a simple passage about a girl on a bicycle.  There was no apparent reason for his laughter."

This is roughly what one of NJ's instructors noted after putting him through a battery of reading tests in kindergarten.

The tests confirmed that NJ is a good reader.

But the instructor's note rang a somewhat ominous tone.  As in: "Doesn't this child know that you're only supposed to laugh at FUNNY things, such as clowns, comic strips and knock-knock jokes?"

However, I patiently - like a saint - explained it during the followup meeting.

It's simply called an absurdist sense of humor.  

And it's something he inherited from his father (and to some degree his mother, who married his father, after all).

I have heard this is true of many Asperger's folk.  They have a sense of humor that might make Tom Stoppard jealous... or Steven Wright.

I mean, let's be honest.  Living with kids of any sort can sometimes be a challenge.  Kids can be willful.  They can be demanding.  They can be smarter than their own good, and certainly more intelligent than their parents.   

And all of these things are extra true if your guiding an aspie through this thing we call childhood.

But most days, I feel strongly that the rewards still, after all, come quite cheaply.

To me, one of the biggest rewards of all is something many aspie kids bring to the table, and that is an absurdist sense of humor... and one often centered on language. 

I know not all aspies have this trait, but I sense a lot of them do.  And I love it.  I mean LOVE it.

Tonight for example...

NJ was hopping out of the tub.  He was really tired, and kinda hanging from his shoulders like a damp Oxford shirt.  He stepped into his towel and leaned against me for a big wet hug, and he said something like "hug me... [indistinguishable]."  

I got the "hug me" but the second part sounded like "Garcia."

So I says, I says to the boy: "Okay, Hugme Garcia, let's get your clothes on."

It was a throwaway line.  I wasn't even going for a laugh. 

But something about it gave NJ the giggles.  He told me to say it again, which I did.  And then I began giggling, and looking at him giggling.  And it was like looking into a mirror, somewhat high, and recognizing the total absurdity of human existence as we know it.

There we were, looking into each other's eyes and laughing like madmen.

What a blessed relief from the yoke of Meaning.  The shackles of logic.  The manacles of responsibility.

By the time I tucked him in for bed, we were still laughing about it.  He even threw in some twists:  "How about, Garcia Mehug?"  Although he never did tell me what he actually had said, the thing I heard as "Garcia."

Kid's a genius, I tell you.  And he's oftentimes a pure joy.  

Makes me want to stop for a moment and think about all the little things about the kids that would make any sensible person grateful... even on the toughest of days. 

Thank you, NJ.

Why I Won't Censor Autism Speaks

I was reading an interesting blog tonight called Not Autism Speaks.

It's a very good blog, and the people who put it together clearly are passionate about advocating for autistics and aspies.  (In the process I also discovered something called The Autism Hub, which I recommend checking out.)

Their worldview is this: Autism Speaks, one of the biggest advocacy groups for autistics in the world, doesn't deserve your money or support.

The reasons vary from Autism Speaks' controversial views and awareness campaigns, to its allegedly fast and loose treatment of statistics and proof.

In the end, I decided not to remove my link to Autism Speaks from my blog.

Not like I'm getting 15,000 visitors a day, but still... even just on principle, I think I'd rather put it out there and let people judge for themselves.  I don't think Autism Speaks is evil, or that they aren't trying passionately to help spectrum people.  

From what I've heard, I disagree with some of the Autism Speaks approaches - certainly I disagree with anything that "pities" autistics.  I think pitying anyone is a form of condescension, and to be avoided at all costs. 

But I don't know enough to write them off as useless or counterproductive in the general campaign to advocate for spectrum people.

And that's why I'm going to leave their link up.

Einstein was Autistic

I am growing increasingly fascinated by the idea that some of the world's most gifted people may have been - or are - on the spectrum.

Some examples you often hear:

- Albert Einstein

- Thomas Jefferson

- Bill Gates

- Sir Isaac Newton

Let me be clear in a couple things: First, I think that only a psychologist or psychiatrist can truly diagnose anyone with an autistic spectrum disorder.  I like to play armchair psychologist.  I am no expert.  But I can read reported facts and draw conclusions from them.

Second, there is value to identifying whether or not these people were likely on the spectrum.

Some people suggest that the value of doing so is some kind of vanity.  My fellow blogger, an autistic named Jonathan Mitchell, is one of them.  

In his post "Undiagnosing Gates, Jefferson and Einstein," he implies that this whole strand of argumentation is an exercise in vanity on the part of parents and autism advocates:

"Should it give hope to parents after finding out what others allegedly autistic have been able to do? If it's possible for these persons, why not their child? It has been claimed that because these allegedly autistic persons have been able to do these things that this gives hope to others who are on the spectrum."

Mitchell may be autistic, but he's smart - and he's subtle, too. 

This is the standard weapon used to undercut the argument that some of the world's most exceptional - and unusual - thinkers were on the spectrum.  It's a very subtle form of character assassination, really.

Beyond Parental Vanity and Pollyanna Dreams

It seeks to ridicule the psychologists who have identified spectrum traits in these great thinkers by impugning their very motives - and thus undercutting the credibility of everything they say.

Meanwhile, Mitchell clearly states his own motivation for writing his article in the article itself. 

Referring to Einstein, Gates and Jefferson, he asks:

"Were any of these people autistic? There are some people who insist that the answer is yes or at the very least they had autistic traits. In addition to giving parents hope for their child's future, it could be used to make an autistic person feel better about himself Of course there is the flip-side that it could induce anger and bitterness to the autist who considers himself far less successful than many neurotypicals. I fall into this last category, therefore, I feel that it is of utmost importance that these diagnoses be dissected. I have attempted to do so in this essay." (Emphasis mine.)

Meanwhile, I fear that like his compatriots in the "undiagnosing" camp, Mr. Mitchell has failed to see a much broader and more important point:

The value in assessing whether these famous thinkers were on the spectrum has more to do with the survival of the species and the health of society than concocting some "feel good" story for kids and parents.

Here's my point.

Why Properly Valuing Neurological Differences Can Help Humankind

If society at large understands that these great heroes may have been on the spectrum - and likely were - then it will understand the danger in writing off autistics as mere freaks, or burdens on society.

In avoiding that danger, it could indeed foster more "crazy" ideas that provide quantum leaps forward in human understanding and development...

Crazy ideas like: 

- There is no fixed position in the universe, and that all motion is relative... 

- Gravity and calculus (okay, I'll give you calculus - that has always been a crazy idea to me)... 

- And computers that can be used in the home, by anybody who can understand simple icons...

The value of accepting neurological differences can be seen in places like Silicon Valley, where it is theorized that many aspies and high functioning autistics (diagnosed or not) have been meeting and having kids... kids on the spectrum.  (For a detailed look at this phenomenon, go here for the Wired Magazine article - one of the best I've seen on the spectrum's effects on society in general.)

It just so happens that Silicon Valley is considered the most innovative (and one of the richest) places on the planet earth.

So...

Having an open discussion about Einstein and company being on the spectrum isn't an exercise in vanity.  

An Open Discussion about Values

It's an attempt to talk about values - and the fact that society would make an enormous mistake by misunderstanding how valuable spectrum thinkers can be.

Such awareness could lead to greater acceptance, which could lead to more funding to understand autism (and treat its negative aspects).  

It could lead to better treatment and therapies.  

And lastly, it could indeed provide some encouragement to autistics that they needn't feel valueless in our society.

And would that be a bad thing?  

Is that really something we need to be careful NOT to do, to encourage autistic families and suggest that they may have an important role to play in the development of humankind?

Right... Let's make sure little Johnny doesn't get TOO excited and think that he might actually be of some value to society one day!

What a depressing way to think about this subject.

I'm not suggesting we encourage every autistic to "be the next Einstein" (although I wouldn't discourage that), implying that Einstein was in some way typical of autistics.  

That would be irresponsible.  It would be akin to a black inner city mom telling her son the only way to have value would be to become the next Barack Obama.

That would be moronic, and mean.

However, it would make sense for that mother to point to Obama as a role model - as someone who proves that being black doesn't mean you have to "accept" any predetermined ceiling for achievement... 

The idea is to aim high, to uncap the kid's sense of psychological potential - not to steer him down a primrose path and set impossible goals.  This is "open" thinking.  You're just trying to remove any possible psychological barriers - not prop the person up and fill them with bilious dreams that will never come true.

I'll get into some of Mitchell's wrongheaded assertions in a later post.

But for now, just consider me in the camp that finds value in discussing the obvious autistic traits of people such as Einstein, Jefferson and Gates.

Indeed, it's time to just look at the facts.  

And that's what I'll try to present.