Aspie Pride

Harry Potter... 24/7

2010-08-23T21:37:00.000-07:00

Well, it's official.

NJ has discovered Harry Potter.

As is my habit, I regularly skim the aisles of the local bookstore for new titles that NJ might enjoy. My wife does the same. And together we've provided him with some pretty solid material through the years.

Mom, I must say, introduced him to his first opus - Jamberry. The two of them literally wore that book out. The covers fell off. We had to buy a new one.

Then it was onto Archie comics. That was my doing. Most recently we also introduced him to the world of Diary of a Wimpy Kid. He knew Roderick's rules long before they reached the silver screen.

And now, it's Harry Potter.

Not long ago, we rented the first HP movie and watched it with the boy. He fell in love. His passion for detailed systems... for ordered social settings... for magic... for the ongoing struggle between villains and heroes... it all made him prone to Harry Potteritis.

He has come down with a chronic case, I assure you.

Suddenly, I am conversant in that crazy lingua potter, and find myself in 20-minute conversations with NJ regarding Dumbledore's new spells... the "Balsisk"... Herme-OH-nee, as he calls her... etc.

Watching him enter this new world makes me wonder at how magical his little mind really is. He can just flick a switch and "get" a whole mini cosmos in about 15 seconds. He can ascertain the rules, the dynamics, the whole thing more quickly than I figured out what a muggle was.

We're just getting started on this journey. But it all makes me wonder...

Harry Potter is somewhat misunderstood in the world of the muggles. Others don't get him.

His own uncle - the big jerk - even calls him a freak!

Harry, however, is much smarter and more gifted than all of them combined. He harbors a great destiny within him. It's just that he needs someone to help him unleash that magic, so that he can use it to help save the world.

That someone eventually arrives in the form of Hagrid, a large, hairy man with good intentions... but bad personal hygiene.

Hagrid shows Harry the world of Hogwarts. He steers him around the halls of the school for wizards, and helps him avoid disaster, although Harry must experience headwinds and overcome challenges all on his own.

I'm sure NJ can relate to Harry on more levels than one. And... please feel free to call me Hagrid.

Peace,

Jay

Aspie Wins BSA Pinewood Derby

2010-05-11T09:30:00.000-07:00

My apologies for the hypey headline... but I just couldn't help myself.

I have a little "Aspie Heroes" sidebar on this blog. And it should include my son, NJ.

This past weekend, he took 1st place among dozens of Cub Scouts competing in the Osceola District Pinewood Derby.

For anyone who doesn't know... The Pinewood Derby is an annual event sanctioned by the Boy Scouts of America. The Cub Scouts participate by crafting their own homemade wooden cars and racing them down a gravity-fed track.

Each heat involved four race cars. And they keep racing until a champion emerges.

Before I get to what happened this weekend, and last weekend... let me give you some background.

I was a Cub Scout myself. And I remember my Pinewood Derby experience like it was yesterday. For whatever reason, I crafted my car almost entirely by myself. The BSA gives you a kit that includes a square block of pinewood, about 7 inches long with grooves for axles. You get four nails for axles. And you get four plastic wheels. Other than that, you can do whatever you want within the rules to make your car the fastest.

I worked hard on my car. And then I went to the derby all excited. And my car came in last two races in a row and was summarily eliminated. In fact, it didn't even make it all the way down the track - either time!

For a seven-year-old, it was totally disappointing. And then I learned that like ALL the other boys there were using graphite to lubricate their wheels. I kind of knew what graphite was - the stuff in pencils? But I had no idea what this had to do with anything viz race cars.

As it turned out, the other boys had worked on their cars with help from their dads. This is an acceptable - and encouraged - arrangement. My dad preferred for me to do all the work myself, to build character I suppose.

But the sting stayed with me for, oh, about 33 years.

Until this year...

Now. I know you're not supposed to live through your kids. I know you're not supposed to carry stuff around with you. And I'm here to say: that's not what I'm about to describe.

Instead, NJ and I agreed to work hand-in-hand on this project.

He would have to be involved in EVERY step of making the car. Designing. Cutting out the body shape. Sanding. Etc.

First thing we did was have NJ sit down with a big piece of blank paper and design his car. He had been thinking about it. "We're going to make it look like a skateboard," he said. I taught him that you need the side view... the front view... the top view... So he drew the different views of the design.

And he even drew the design details - the paint scheme, etc. I mean, we're talking Frank Lloyd Wright here people! ;)

But the plans were good. And we used them to cut out NJ's car body.

While I did let him practice using the electric jigsaw on a piece of wood for a minute, I did the primary cutting of the body. But then I turned him loose with the electric finishing sander to shape and smooth the body. He was REALLY good with the sander.

Next we polished the axles. We polished the wheel hubs. NJ painted the car with his mother while I was away on business.

The next morning, we went to the Pack 308 Pinewood Derby. And lo and behold... NJ won every single race!

He took first place, and was rewarded with a nice big trophy. They had Olympics-style music playing. The spotlight was on him and the other top-3 finishers. I mean, it was a big event. There were hundreds of people in attendance. NJ literally skipped away from the racetrack with a smile on his face.

And I couldn't help but feel that a big circle had been closed. I got the chance to give NJ the Pinewood Derby experience I never had... and it played out beyond our wildest dreams... beyond anything I could have planned or imagined.

It was, in short, a God thing. And so is NJ.

A Method to Get an Aspie to Do Something He Might Not Want to Do

2010-03-17T19:27:00.000-07:00

I've always had dreams of being a father... probably starting in childhood, actually.

Among them has been "having a catch," in Field of Dreams parlance.

Well, as it so happens, getting NJ to "have a catch" can be like opening a really fresh Chincoteague oyster. He resists and you can get to feeling pretty clumsy by trying to get him to open up to the activity.

But I simply insist that my boy plays some form of baseball with me. Dammit, I helped to change his first poopy diaper. I walked the wooden floors of our Annapolis craftsman till 3 a.m., night after night... with him in the baby sling. Because he did NOT appreciate stillness when he was trying to get his beauty sleep.

My point being, the boy OWES it to me (I know, I know... it must be a guy thing).

So I took NJ down to the local Sports Authority to buy a bunch of plastic baseballs and a practice bat. We also bought him a glove.

And it was down to the local park to start a'practicin'.

As I coached and cajoled, he would tighten up. I would back off. And try coaching a little more. He kind of took to it, and began bapping the balls pretty good. Our last round he hit about 75% of the balls - including some admittedly unofficial "home runs."

But his patience wore thin. He kept asking: Do I HAVE to practice? I would simply say, Yes, NJ, you do. Let's keep hitting.

We did a little more and took off before he soured on the whole experience...

Fast forward one week...

We're in the back yard.

Round 2 of the Cal Ripken Jr. Father-Son Instructional League Playoffs 2010!

Except this time, NJ loses patience very quickly. After just a few swings, he started asking when it was going to end.

We had been playing "Cloudy with a Chance of Meatballs" on the Wii beforehand. And he wasn't pleased with being pried away from the game.

So I told him: "Hey, let's pretend the balls are gummy bears... and your bat is a Hot Enougher!"

A bit of background... In the video game, the character uses a kind of torch (the Hot Enougher) to melt gummy bears.

His eyes lit up and he was INSTANTLY transformed into a willing participant. It was amazing!

"What's that?" he would ask about the ball in my hand.

"This is a gummy bear!"

"And who's it going to attack?"

"It's attacking Sam!" (a character in the game).

"Here comes! Look out Sam!"

Dad throws ball. Um, gummy bear.

Kid WHACKS ball with bat. I mean, with the Hot Enougher.

And the thing goes flying.

Pitch after pitch, we repeated the same process. I played into HIS interest and turned our practice session into a real game, with imagination, with fluidity... and tailored to where his mind really wanted to be at that moment.

I actually wound up being the one to shut it down. He would have kept on hitting into the twilight. And what was weird was, he was easily hitting balls he would have missed before... and really roping them well over my head.

I learned something. While we often point out how Aspies don't think enough about what other people are thinking... I sometimes don't have enough consideration for what HE'S thinking.

It's so easy to write it off as some kind of "special interest" that I shouldn't get caught up in - or that I should perhaps even discourage.

BS. Nonsense.

He's got a right to his thoughts, even his little obsessions.

We all have them. Except in adults, and with certain popular interests, we usually call them passions.

I learned I can play to NJ's passions, and meet him halfway.

And somewhere in the middle, we can have a LOT more fun than we would have staying in our own little worlds.

Peace.

Compassion and Gratitude

2010-01-15T23:47:00.000-08:00

"WE DON'T HIT! REGGIE, STOP IT NOW."

Me. Yelling. At someone else's kid. In front of them. At a Cub Scout meeting!

What is the world coming to?

Well, this little fellow needed a wake-up call of some kind. He simply wouldn't respond to regular instructions to stop hitting while playing with NJ.

These two have known each other for years. They've wrestled for years.

It's the nature of their relationship. And that's totally cool.

I think "guy stuff" is required for any kid to develop semi-normally. And frankly, wrestling often breaks down into fisticuffs when you're a little boy and you don't know boundaries.

But normally, that kind of ends by three or four.

Reggie is seven going on eight. And even though NJ was actually getting the better of him in terms of wrestling... Reggie continued punching and kicking at NJ as my son pushed him back and laughed at his outrageousness.

Well, eventually he moved onto to his mother, a friend of NJ's mom and a very sweet lady.

I could hardly bare to watch, and in fact would later intervene.

But not before I took NJ and Reggie outside to run off some steam.

Sure enough, they get 30 feet away and commence the wrestling. And sure enough, Reggie starts punching again. When I saw him swing and hit NJ in the face, I pretty much went into my Exorcist voice and physically pulled Reggie to one side.

"I told you to stop. Don't you EVER touch anybody in my family. EVER. If I ever hear about you hitting NJ again, if I ever see it again... (My mind rifled through the legal calamity that might befall me were I to lay out my next line, so I toned it down)... Something bad will happen to you."

And I left it at that. And I separated the boys.

And STILL the kid kept trying to go around me to reengage in the shenanigans.

I was gobsmacked, to quote Gordon Ramsey.

Clearly, the child has no sense of proper behavior... to the point that he will simply defy a rather large, and totally pissed off, daddy who is threatening him in an obtuse but fairly assured way.

This was not the first time it has happened.

Later, I talked to him mom, telling her I had to separate them physically. Telling her I had to raise my voice at him. And listening to her explain what's been going on...

"This year, his teacher says he's not talking to anybody in class. They say he knows the math. He's like three grades ahead. But he doesn't do it. He doesn't like the assignments." Etc.

I noticed during speaking with other adults that the Den Leader continually pointed to her nose to try to get him to pay attention. His eyes almost never met hers.

Hmm. Do we have another Aspie on our hands here?

Suddenly, my rage at this little guy had morphed into compassion. There was, and is, a definite "issue" as they say in the medical parlance.

Until now, his mother and father have been adamantly anti-drug... anti-therapy... anti-... well, anti-anything, if it involved admitting that Reggie's lifelong behavior strangeness might be something with a diagnosis.

But the first signs of a correction for Reggie's issues arose during our conversation.

"He's going to go into Mrs. Roberts group this year."

The lady in question is one of the most amazing, effective and compassionate people NJ has had the chance to work with. She runs the social group he goes to a couple times a week at school. He loves her, and she seems to genuinely enjoy his company too.

This is a great sign. They're opening up to the possibility that Reggie's problem could have serious consequences - socially and developmentally - if not addressed asap.

I pray that Reggie gets some help right now. No waiting. Puberty is just around the corner, and when you get there, you're lost. It's over. Interventions don't take when all you can think about is hiding the evidence of masturbation.

I have definitely seen Reggie on good days. Sometimes, he behaves admirably. But apparently this is getting worse, not better.

We were able to give her sound advice on who to talk to for a good eval. We listened, we totally related. We went and found Reggie and gave him some big hugs, which he actually seemed to enjoy.

In the end, I simply said to myself: "Thank God NJ's mine." I felt very gracious. I almost always do when it comes to that lad, but I can see that there are people who are earlier on in the struggle than NJ now...

I can see that every single kid has his foibles. None of them are perfect - well, they all are, but you know what I mean.

And most importantly, we had a chance to reach out and, hopefully, help just a little.

Ski to Hot Chocolate!

2010-01-04T22:32:00.000-08:00

What does the title of this post mean?

Not much. Unless you happened to be standing in line at Sierra-at-Tahoe ski resort last week.

That's where NJ spontaneously broke out into this refrain. It's a silly little song he began singing. And we all joined in. Sure, it was repetitious. But after awhile, you simply give yourself over to the absurd fun of it.

It was just part of a very interesting trip to California.

There, NJ learned that "family" meant more than his mom and dad and occasional visits from his Nanna and Poppop from South Carolina.

He immersed himself in an ocean of family craziness... and love.

In particular, he buddied up with my sister's daughter, who is one year older... and just as inclined toward the absurd.

They bonded instantly. And they played for three solid days. Intensely.

They traded video games. They played board games. They watched Up! (great movie). They played with Tank the dog in the garage, where he - a giant Lab - entertained them for approximately 20 minutes by eating an enormous, raw potato.

The house was full of holiday guests at that time. And Caroline, NJ's niece, was overheard telling him: "Don't you wish everyone would leave, so we could start having fun?"

She really does "get him" apparently.

To see NJ soaking up all the easygoing family love for days on end... and reciprocating... was balm for the soul. He snuggled on the couch with blankets, drank tea, watched football with Grandpa.

One night he took center stage. He stood in the middle of the living room and sang ridiculous songs to a rapt audience of aunts, uncles, cousins, grandparents and a couple additional house guests.

He sat at the kitchen counter, gobbling cookies and answering questions. He warmed up to Grampa, giving him a big hug on the second day. He asked people how they were doing in the morning.

And yes, he spent plenty of time in the bedroom playing his computer games, too. (I don't underestimate his need for decompression time, especially amid a new and busy environment, no matter how loving.)

It was, all in all, an incredible experience. NJ absolutely took to his giant extended family in Northern California. And they absolutely fell in love with his amazing little personality - his self-assuredness. His absurdist sense of humor. His gentle, seven-year-old love. His penchant for singing silly songs and monologuing about video game adventures.

My favorite moment: having to tell him, rather lamely, to "calm down". He was dashing through the house, back and forth, amid a game of hide and seek with his cousin. But they were both laughing too hard, and having too much fun, for me to say it a second time.

Peace.

Some Asperger's Books Are Just Idiotic

2009-12-15T20:56:00.000-08:00

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

2009-12-10T16:53:00.000-08:00

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...

2009-11-25T11:55:00.000-08:00

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

2009-11-22T13:37:00.000-08:00

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

2009-11-21T20:02:00.000-08:00

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

2009-11-02T19:09:00.001-08:00

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)

2009-10-31T08:38:00.000-07:00

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...

2009-10-25T20:33:00.000-07:00

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!

2009-10-21T19:20:00.000-07:00

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?

2009-10-12T20:23:00.000-07:00

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

2009-09-26T20:10:00.000-07:00

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

2009-09-18T19:30:00.000-07:00

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

2009-09-13T20:56:00.000-07:00

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...

2009-09-09T17:18:00.000-07:00

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

2009-09-08T08:11:00.000-07:00

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

2009-08-23T20:44:00.000-07:00

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

2009-08-18T18:32:00.000-07:00

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"

2009-08-16T17:01:00.000-07:00

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?

2009-08-13T10:19:00.000-07:00

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...

2009-08-07T22:10:00.000-07:00

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

2009-08-07T21:54:00.001-07:00

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

2009-08-07T20:50:00.001-07:00

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

2009-07-30T16:00:00.000-07:00

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

2009-07-30T06:31:00.000-07:00

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

2009-07-26T08:26:00.001-07:00

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...

2009-07-23T21:56:00.000-07:00

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

2009-07-17T15:13:00.000-07:00

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

2009-07-15T19:17:00.000-07:00

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

2009-07-14T18:49:00.001-07:00

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

2009-07-10T20:05:00.001-07:00

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

2009-07-10T06:01:00.000-07:00

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.

Asperger's in the Mainstream Media

2009-07-09T17:13:00.001-07:00

I am all for raising autism awareness.

In some ways, I think raising awareness is one of the leading ways to destigmatize autism spectrum disorders, including Asperger's.

And that is the first step to the uptake of individuals with ASDs into the mainstream of society, where they can contribute unique gifts that otherwise would go wasted.

And what gifts they can be...

While some say it's impossible to diagnose the dead, I think it's ridiculous to totally dismiss the possibility that Albert Einstein, for example, was on the spectrum.

He strikes me as an obvious autistic, or at least on the spectrum.

For example, not only did he have very little regard for standards of clothing fashion (he almost never wore socks, and preferred rumpled trousers and sweaters to the normal suits)... His focus was legendary. He didn't speak until he was 5.

Despite his brilliance, he was forced to accept a lowly job as a clerk.

His hair was famously unkempt... And emotionally speaking, he was almost totally incapable of dealing with other people, including his own son, who I believe probably was on the spectrum too.

He dumped his first wife without any seeming emotional distress, yet it was also clear that he cared deeply even though he seemed to express this care more intellectually than intimately.

There seems to be an anti-aspie argument out there that disallows this kind of theorizing. They suggest it's a kind of pollyanna revisionism - a fantasy or, worse, a deception.

Well, I don't know about that.

They can't have it both ways.

They can't bemoan the fact that aspies have these traits - lack of social skills, non-standard dress, unkempt hair, intense focus - and then simply suggest that Einstein's obvious spectrum symptoms were "genius" and had nothing to do with ASD.

Anyway, it's always good to see spectrum disorders being talked about in the mainstream media. The more we talk, the better.

And that's why I'm a fan of the new political commercial from Autism Speaks.

It has to do with insurance discrimination and making sure that families affected by autism are protected - or at least not discriminated against.

In fact, I really like what I've seen of the Autism Speaks organization in general.

Keep up the good work, people!

Peace.

Storm Clouds and Blue, and Memories of You

2009-07-08T18:56:00.000-07:00

Well, I'm officially missing the boy.

He's been gone with Mommy for one week now. They're visiting with Nana up in South Carolina.

I'm here in the rain, eating chocolate and shaking my fist at the DirecTV (really? The technology doesn't work IN THE RAIN?).

As I catch snippets of Gordon Ramsey's new show, F Word, and ponder my fate, I can't help but think about how damn amazing it is to be a father. I'm not saying there aren't maddening days. That there aren't times I feel like a damn failure as a dad, when I drop an F Word myself in the midst of a typical morning of South Florida traffic.

And NJ's aspie side comes out: "Dad, that's not "I Care" language."

It's hilarious. He recognizes swear words. But he's never been tempted to use them.

Which is weird, because he's really devilish - and loves to provoke.

For example, he sometimes calls me Mom. And then he stands there with a goofy grin on his face, waiting for me to correct him.

He has also started doing this silly laughing thing, where he pretends to be nervous and kind of chuckles as he's "explaining" the situation. "Nate, what are you doing in here?!"

"Well (ha ha ha)... I'm not really (hahaha) doing anything!"

Kid is a ham.

The Kid Who Made the Summer Camp Picture "Special"

In fact, the other day I picked him up from his last day of regular summer camp.

His face was red. He was still wearing his "crazy shorts" because it was crazy shorts day. He hopped in the car, and his counselor - Ariana - handed me a packet with some odds and ends.

Included among them: his official summer camp picture.

There they were, 15 beautiful kids - the Pine Cone 2 Group.

Smiles all around, standing there in their green shorts and white tee-shirts. Boys and girls, all about NJ's age.

And right in the middle of this picture of summer serenity is one blond-haired boy, fingers firmly inserted at the corners of his mouth, tongue sticking out, silly face in full effect. Ah, NJ. You never had a chance.

Little does he know, his father was a major jokester as a kid too.

I was always quick with an absurd comment... A silly voice... An overly dramatic song...

I miss my little chip off the old block tonight.

Not even bits of Gordon Ramsey beaming through storm clouds can alleviate my blue.

But come Saturday morning, he'll be here again. And we'll proceed making more memories.

At least half of them I expect - and hope - will be completely absurd.

An Effective Discipline Strategy for Asperger's Kids

2009-07-05T19:57:00.000-07:00

Since he was a toddler, NJ has been... how should I put it... willful.

Before we discovered his Asperger's "diagnosis," I once referred to him as the Tiny Overlord.

We still get a laugh out of that one.

But now he's six, and he's still very... well... willful.

However, somewhere along the way, I realized that following the orders of a toddler (however "sensible" they seemed) was a recipe for insanity.

For example, a kid might say: "I want a drink. Give me juice NOW!"

That's not the right way to ask for something. Sure, a parent doesn't worry about propriety, or manners at first. But eventually, manners begin to matter, bit time.

You realize: when little Billy goes to Grandma's house, she might not be so forgiving.

When he makes demands of the babysitter, she might scoff and insist that he "ask properly." If he doesn't know, it could lead to some negative situations and confusion.

When he makes demands of the daycare provider?

Not likely that any daycare provider worth her salt will put up with a rude, demanding little kid. Same with teachers, coaches and crotchety Aunt Melba.

Eventually, we learn that behaving is a survival skill. Kids need to learn how to behave, and be polite, in order to function well in society.

As the great Temple Grandin says of spectrum kids: There is never an excuse for rudeness, period.

Of course, we tried everything to keep NJ from doing bad things, like digging into the cookie jar without asking... knocking stuff off the bookshelf... pulling all the toilet paper off the roll... et cetera, ad infinitum.

We patiently explained everything, which became maddening to me. We raised our voices, which never quite felt right. Sometimes we said nothing and simply removed the child from the trouble area.

And besides never quite feeling satisfying, none of it ever really worked very well.

NJ wasn't learning discipline, and we weren't experiencing the relative peace of mind that comes from having a well behaved kid.

We made that a goal, and began searching for solutions.

And we finally discovered it with a book you can get at your local bookstore, called 1-2-3 Magic.

This book by Dr. Thomas Phelan was an absolute Godsend.

It lays out a very different approach to disciplining kids that had everything we needed.

1. It was gentle but firm - you never have to raise your voice again.

2. It works consistently for all kinds of "stop" discipline situations - where you want the kid to stop whatever he's doing (there are methods for "start" discipline, too, like brushing teeth and putting on your his clothes).

3. It puts the power into the kid's hand, and teaches him self-discipline. It's not totally a one-way imposition of rules, but gives the kid a chance to correct his own behavior.

This last point is extremely important to me. I think it actually leaves some of the power with the kid and allows him to maintain their self-esteem more fully than a purely punishment-based system.

How the 1-2-3 Magic Approach Works

So how does it work with aspies? We have found that it works very, very well.

I would strongly suggest reading the book. It reveals the system in detail, and how to use it. But basically, it's very, very simple.

When a kid is doing something you want him to stop doing, you simply begin a counting process.

You start with: "That's one."

You tell the kid what he needs to stop doing.

If he continues doing it, then you wait about five seconds to give him a chance to correct the behavior, and then you say: "That's two." (Note: Of course, if the kid's doing something dangerous, just stop him.)

If he continues, then you simply say: "That's three, take 5."

The "take 5" part refers to the number of minutes the kid will then go into "time out." Generally, you give the kid one minute of timeout for each birthday he's had. If he's three, he gets three-minute timeouts, etc.

Time outs should ideally be spent out of eyesight of the parent, so the kid can't try to tease you, or play you in some way. Good places might be a stair or a bedroom.

But at each step during the process, the kid has a chance to correct his own behavior, and thus avoid the punishment of the time out. He learns to self-discipline, which is so much better than simply waiting for a parent to yell and reacting.

We have found it very, very, very effective with NJ. It's the only thing that has worked consistently, and it has worked for years.

I frankly don't know where I would be without it.

The thing is, it needs to be used consistently. And as always, we need to make sure we're not punishing something beyond the aspie kid's control. In other words, there are situations where the kid just needs to be left alone... he needs a hug... he needs whatever he needs. That's up to the parent, of course.

But if you're looking for a good way to consistently discipline your aspie kid (aged 2-12), I would strongly encourage you to check out 1-2-3 Magic.

Peace.

Asperger's, Autism, Spectrum... and the Most Important Label of All

2009-07-04T12:52:00.000-07:00

The topic of labels when it comes to the spectrum seems to be getting hotter.

A blogger with The Examiner (not sure where the pub is based) put out some thoughts on the matter, and it elicited some heated responses.

It reminds me: The "spectrum" label is perhaps the most important of all, sometimes.

When we remember that all of us fall somewhere under this same umbrella, that's a good thing.

It brings a sense of shared experience, and shared solutions.

But of all the labels we use - spectrum, autism, Asperger's, HFA - there's an even more important label to keep in mind.

That label is "human beings."

Peace.

Is there a difference between Asperger's and autism?

2009-07-02T20:25:00.000-07:00

I had the pleasure of watching Autism the Musical on HBO last night.

It's a tremendous and revealing documentary about a group of parents and teachers who gather together a bunch of spectrum kids and put on a musical play.

Being mostly exposed to aspie kids and PDD-NOS kids in my regular travels, it was interesting to see what kids on the far end of the autism spectrum are like.

One little guy couldn't speak. A story line within the picture had him learning to use a keyboard to communicate with his parents and others.

Amazingly, he typed to his Mom: "I am going to put you on the spot."

She laughed when she heard it, having no idea what he meant but encouraged by his directness. And he continues typing: "You need to be a better listener."

Wow.

Imagine a kid who doesn't speak feeling that his Mom needs to be a better listener. Why would he say this? What could it mean? It made me realize that all spectrum kids, regardless of their outward behavior or appearance, are "there."

They are present.

They are fully aware.

They are not blind to the world, or the ways of the world, or people's feelings, including frustration, hostility, and most important, love and affection.

Yet they do manifest different groups of symptoms, depending on where they fall on the spectrum, etc.

And it all got me to thinking.

What is the difference between autism, high functioning autism, Asperger's and PDD-NOS? And do we really need all these different labels?

The answer to the first question is still open for some discussion. But the answer to the second question - do we need different terms to describe different groups on the spectrum - is yes, in my opinion.

Different Terms for Different Groups Makes Sense... In Most Cases

Because to me, the terms simply reflect the reality that there are different groups of symptoms and classifying them can be useful when it comes to developing therapies.

There are similarities, perhaps, among all spectrum people.

But the differences between the different groups can be profound and obvious, and require totally different kinds of therapies and interventions.

For example, the differences between a non-verbal autistic person and an aspie are fairly profound and obvious.

Some aspies can even be very talkative and fairly social, especially with adults. NJ is an example. So his challenges might be best addressed with specific social stories and interactions with his peers.

The non-verbal autistic might needs more physical interventions, and occupational training (especially early on). Therapies could focus on self-help skills and the like, along with the usual communication stuff.

When you imagine a public school setting where people are moving fast and teachers and therapists are very busy, having different terms for these two different individuals is invaluable.

They can start with an immediate baseline for working with the student. They can develop therapies based on the markedly different therapeutic models developed for Aspergians and autistics and so on.

In other words, in such settings more specific labels can actually be very beneficial - to the students and everyone involved.

Considering that, I think lumping all spectrum kids together under a single label - autistic - could be a disservice on some level.

And it could actually lead to confusion in the culture, and slow progress toward understanding and acceptance of all spectrum folks.

For example...

If someone's idea of "autistic" is a kid who doesn't speak, and they meet NJ, and he talks their ear off... they might say: "What? This child's not autistic. He must just be rude."

Maybe "autistic" simply isn't the right blanket term to use when we want to use a blanket term.

If we're going to use one term to group together everyone on the spectrum, I suggest we choose the word "spectrum" instead of "autistic."

A spectrum person... a person on the spectrum... a spectrumite... spectrum kids... etc.

This seems to have less negative connotations, for starters.

And it also connotes the broad spectrum of differences among all people on the spectrum, which I believe will incline neurotypical people more toward the realization that every child is different - and that every individual must be treated like an individual human being.

Being "somewhere on the spectrum" is simply more precise than "having autism" which is a heavily emotionalized term that connotes and denotes low functioning.

We've moved away from terms like "idiot savant." And we've done so for specific reasons: the emotional content of words matters.

I'm not arguing that we do away with the term autism, of course.

I am just suggesting that it be used to refer to people who have classic autism.

I think HFA should be used for high-functioning autistics (differentiated perhaps by a combination of normal to high IQ with late language acquisition)...

And I think Asperger's for someone who has normal to high IQ with normal or early language acquisition.

For everyone else displaying symptoms such as lack of social connections, lack of Theory of Mind, etc., then PDD-NOS would still hold.

To do away with these separate terms and definitions I think is a kind of dangerous thing. The needs of an autistic are different than the needs of an Aspergian.

When it serves our purpose to band together, then I think we should go under the term "People on the Spectrum," or spectrumites, or something of that nature.

Anyway, as always I would love to hear your thoughts on this issue.

Labels aside, my basic point is that all people are individuals.

And we must always treat the individual and the symptoms, and not the diagnosis - whatever that diagnosis may be.

Peace.

Starting to Feel It

2009-06-28T10:52:00.000-07:00

Well, we're nearing the end of the 10-days-without-Mommy experiment.

And I must say, it has been instructive.

NJ is doing okay. He's ready to see Mommy, but he's otherwise functioning pretty well.

I however am losing patience, alas.

One problem with an only child during summer, sometimes his friends go places. Like Japan!

His closest playmate is currently in Japan for the summer, visiting his Mom's side of the family, and they won't be back for a couple months.

His other closest friend, Derrick, has a sister at home to play with. That coupled with the fact that Derrick's just come off his own grueling bout with summer camp (as a spectrum child, it's a little more taxing)... and his mother would presumably rather relax at home during the downtime this weekend... well, it's meant a lot of Daddy playtime.

Too much, actually.

While it was fun playing with my six-year-old the first, um, eight straight days or so... the past couple days have been a challenge.

You just get to the point where it's like... wow. I can't be a six-year-old anymore. He really needs to be around other kids.

But it's the summer, so what to do?

Well, we were going to go to the water park today. But that plan got waylaid because Daddy had to clean the whole house. We thought about hitting a movie and letting him go into the playroom, but he's complaining about that too.

Ugh.

So, well, I suddenly understand fully what single mothers are up against. Especially single moms with aspies... and whose partners have moved to some other state or are otherwise not around to help.

Wow, now there's a recipe for the nut house, I assure you. Being alone with a kid all day, every day, for days on end... without any other kids to take the pressure off.

But enough negative.

And now onto the positive... "Rod Roddy, tell them what they've WON!"

We're both still alive and basically healthy. The house is clean and decorated for a little welcome home party for Mum. Our teeth are brushed (finally). The pool is not overflowing (anymore). And things are more or less under control (for the moment).

But I am more convinced now than ever: aspie kids, like all kids, need to be around their own kind... KIDS.

Even if they just play next to them, ignore them, whatever. I don't think it's very healthy to basically give into the temptation to keep them always in their "comfort zone" (home, in front of the computer or playing on the bed).

It's time to push outward a little. Always the pushing outward into the world, creating the world before you, and showing them how to do the same. We need to get out there today, and we will somehow. Hopefully the South Florida thunderstorms won't soak us, or blow us off the damn road.

Cabin fever has officially set in here. And while we have learned we can survive without NJ's Mommy around, we certainly don't want to make a habit of it.

The Greatest Bumper Sticker Ever

2009-06-25T11:14:00.000-07:00

I've seen some funny stuff at Cafepress.com.

But now I am happy to report, that I've seen something quite inspiring there, too.

It's the Aspie Pride bumper sticker!

I don't generally like bumper stickers, but this is one I might have to have.

If they would only get the URL correct!

Just kiddin'...

Jay

Homeschooling and Asperger's - Does It Make Sense?

2009-06-25T11:00:00.001-07:00

I was surfing the message boards at Wrong Planet the other day.

My question to the room was: Homeschooling, a good idea or not? I specifically was referring to homeschooling through the junior high years. This was far and away the worst time for me, in terms of bullying (7th grade was pure hell).

And from what I've read, bullying peaks then.

I received some very interesting responses, mostly from aspies.

The two main respondents were both homeschooled guys. One was firmly in favor of homeschooling through junior high. But he had a very interesting caveat: You MUST base it on the kid and his experience at school. You don't need to preemptively take him out of public school if he's excelling there and getting along okay.

The other fellow was less supportive. He felt that homeschooling has retarded his social development unduly. However, he had been homeschooled the whole time.

"It took me years to make up for lost time," he said to me.

I guess we still have a few years left to ponder this question, but I am definitely keeping a close eye on NJ's social development, and watching for any telltale signs of bullying. I will address any bullying directly and hopefully, with a measure of self-control.

Nothing gets my blood boiling more than the idea of someone picking on an innocent kid, especially mine.

So the homeschooling idea for aspies seems to be very much open for debate, from what I've heard so far. I will continue research into this area and report back on whatever I find.

Peace,

Jay

Fishing... and Father's Day

2009-06-22T15:46:00.000-07:00

I got the best gift a dad can get... and I got it one day early, on Saturday.

NJ caught his first fish.

It was about 13 inches. Largemouth bass. Real mean and nasty.

Thing fought like hell. Zipping across the Florida lake behind my wife's house like some kind of Loch Ness Monster on crack.

Okay, I exaggerate.

But he did catch this beast, using live bait (shiners). He reeled it in himself, and he even managed to release it properly back into the lake.

As he cranked on his little-kid reel, he said: "I can't do it!"

I encouraged him on, and told him that if he could get it to the edge of the lake, I would help him land it.

So he struggled and cranked, and the fish was fighting for dear life.

FLASHBACK: I was five years old, fishing with my Dad on the Chesapeake Bay.

We were trolling for bluefish. He was driving our 19-foot inboard-outboard.

We were trolling surgical-tube lures through a patch of seagull-swarmed bay and suddenly, it hit.

"Grab it!" yelled Dad.

I did and started trying to reel. It was a tremendous fight. My arms were shaking. I "couldn't do it" either.

But like I knew, my Dad knew.

I could do it. And I got it up to the boat, and Dad helped me land him.

Nate could do it. And he got it up to the shoreline, and I helped him land the fish.

The fact that these two events were about 34 years apart only makes them both more amazing to me.

Sometimes it feels like these stories, our lives, are being written by one hell of an author. I certainly couldn't make this stuff up if I tried. But I sure am thankful, not only for my experience with NJ this weekend...

But for my experience with Dad, and all the others to come.

Peace,

Jay

Guy Week

2009-06-18T17:08:00.000-07:00

Well, it's official.

NJ's mom is on her way to Baltimore to embark on a 10-day cruise... to the Bahamas.

Which is somewhat odd because we live about 20 minutes from Bimini Island, in Palm Beach County.

That said, the next week and a half should be interesting. No hand-offs. No Mommy time.

NJ is six. He doesn't understand why cruises are necessary at all, let alone ones that take his Mommy away for 10 days - the longest he'll have been without her since birth.

But I'm greatly looking forward to it.

I think NJ and I really could use some "guy time."

Indeed, we've got some movie nights on tap. We're hitting the water park on Saturday (hoping to wrangle his buddy Derrick into the trip - he's a great lad, who has been diagnosed PDD-NOS, Pervasive Developmental Disorder-Not Otherwise Specified).

Basically, it's a blanket diagnosis for high-functioning autism. And he's indeed very high functioning.

It was his mother who first told us about therapy group, which has made a remarkable difference in NJ's social skills already.

Regardless, we're getting into some of those fun summer days... splashing around in the pool... drinking bottomless glasses of iced tea... nibbling cookies... staying indoors during afternoon thunderstorms and watching SpongeBob Squarepants... reading... gaming... and continuing to do our best to branch out and make connections with other aspie/autism families.

I'm looking forward to some blessed time when I couldn't care less about autism, Asperger's, school rules, bullies, embarrassment, worry, the latest theories, or how we're possibly going to make it through.

We're going to just turn it all off for a few days. And I plan on thoroughly enjoying my son - mano a mano.

When we're playing and hanging out, I'm not aware of anything needing my concern. He's just NJ, and I'm just his Dad. I know him so well, that he is absolutely "normal" to me. And he's seeming a little more "normal" in the classic sense every day. He's making more eye contact, having more conversations, playing with more of his peers.

But really, when you're at the Friendly's with a big Birthday Cake Friend-Z in front of you and an afternoon of nothing in particular to do after that... and you've got the most beautiful boy in the world... and you've got a little window of freedom, and a few bucks in your pocket for a movie... you realize... this journey is about more than Asperger's... it's about more than diagnoses and therapies and challenges.

It's about life... it's about love... it's about family. And it can be heartbreakingly beautiful.

Peace,

Jay

Aspies and Bullying... My Greatest Fear as a Dad

2009-06-15T16:11:00.000-07:00

It is my single biggest fear at the moment.

I'm talking about my son being bullied, especially when he reaches middle school.

The other day, I posted something on the Huffington Post, a response to a woman's article about AS. She was jokingly comparing AS traits with typical male traits, and I differed from most of the commentators in that I actually found her piece amusing.

A few people tactfully told me that I was off base. And one woman's comments hit home in particular.

She said, in effect: Right now, it seems like this kind of stuff is acceptable and harmless. But what will you say when your kid reaches middle school and is possibly the victim of bullying, ostracizing, etc.?

She made a good point.

As aspies get a little older, and into the teen years, it seems the relative isolation they can experience gets more acute and painful for some. It can also lead to various forms of bullying.

And that possibility absolutely breaks my heart.

But then I thought about it and the question came to mind: "Now what?"

As in, what can worrying, being sad, feeling hopeless, ranting or any other negative attitude do to prevent my kid from being bullied?

While I might sound naive, I think that practically, it's naive to think that somehow a "victim" mindset will solve anything.

(As an aside... I don't know. I'm still trying to sort out how I feel about humor and Asperger's. I would say that humor and Asperger's are fairly natural companions.)

But I know that won't be everyone's cup of tea. Some find it more sensible to maintain a seriousness at all times, lest they (or their loved one) let their guard down and get hurt. And I think that we are at the very beginning stages of the civil rights movement for aspies.

But we're going to get hurt. Our aspies will get hurt.

I know my kid will be bullied.

So once I've acknowledged this sad fact, and gotten angry, and shaken my fist at God for it... then what?

How to cope with that? Here are some early thoughts...

Solutions to the Bullying Problem... or at Least a Start

Talk to him, ask him specifically on a regular basis: Are there any kids bothering you at school?

If it comes up, there are policies against bullying kids with any kind of disability in our school district: Palm Beach County. More than that, you can file civil charges against the bully and his/her family, and against the school district itself if it fails to protect you aspie.

This is serious stuff. I think we must continue to raise awareness and address this aspie/bullying thing head on.

It could be the single biggest problem our kids will face. And I am serious about finding solutions, and helping to actively lower bullying rates for aspies and all kids.

That said, if we can't occasionally laugh at the world (including the lighter side of Asperger's) then we've already lost.

Peace,

Jay

Play Groups Can Help Aspie Kids Develop Social Skills

2009-06-12T20:16:00.001-07:00

It's amazing how wrong people can be... even when they're really well intentioned.

I was sitting in the magazine section of the local Barnes & Noble not long ago, leafing through a copy of Baseball America.

The elderly lady next to me sat down next to her friend and I couldn't help noticing she was holding a magazine about autism.

She said something to her friend about an article on Asperger's. And they commenced to talking rather loudly (in that charming way only New England grandmothers can) about her grandson who was an aspie.

This was before NJ was officially diagnosed (but we already had him in a play group at an unbelievably effective, local therapy center for ADD and spectrum kids called Therapy Spot).

For some reason, I felt inclined to introduce myself.

"My son is an aspie," I offered. "I can relate."

We began talking. Clearly her grandson was the apple of her eye. He was her favorite grandkid apparently. "He's just my little special one," she said.

Then she went onto say: "All the play groups and therapy? Forget it. None of it makes a difference."

She said this in the most loving, sensible-sounding way you can imagine. And I believe she believed what she was saying.

I also believe she was totally, and completely, full of crap.

I told her about NJ's play group, and some of the truly cool stuff they were doing. How they put them in a small room and forced them out of their aspie shells.

One of the most interesting exercises: having the kids pair off with a partner, then forcing them to draw a picture of the other kid, and talk about it afterwards.

Now that's some cool stuff - forcing them out of their comfort zone into an area of sharing.

That's the only place where they can then experience the rewards of shared experience... rewards that are, hopefully, profound and fascinating enough to, eventually, make them want to come back for more.

That's exactly what has been happening with NJ.

At first, he hated play group. He complained about going and didn't cooperate much while there.

But as he continued going back, week after week, he began opening up. He would actually talk about the other kids there by name after the sessions, and even tell stories.

His play group therapists -- two incredible women named Monica and Ellen -- began telling stories of Nate's "awakening" in the group. They were honest, too. When he had bad days, they would tell us. And they would tell us when he had an emergence into the group.

Actually, NJ's proclivity is to try to lead the group, to control the group.

That in itself can cause problems, which he then needs to learn to navigate.

The important part to me is that he has formed bonds with his group mates. He has talked to me about these kids at night, in the hot tub, between gazing up at the stars and telling me truly ridiculously bad jokes.

One of the kids in his play group came over for a play date a few weeks ago.

They had an absolute blast, playing in the bounce house, climbing up and down NJ's bunk bed ladder... making pizzas together in the kitchen.

Yes, NJ still operates in his aspie way, and his buddy, Derrick, still has some classic PDD-NOS traits (although they're pretty slight at this stage, because he's been doing play therapy for years)...

But the bottom line is, they've become real friends.

The other day, I was walking NJ into class at his Montessori school. From well behind us, coming up the sidewalk, I hear a cheerful kid's voice ring out in the morning sun: "Hey, there's my buddy NJ!"

I turned around, and it was Derrick.

And yes, I did have to say: "NJ, look who's here!" But he did turn around and greet his little pal, and once Derrick caught up with us, I stopped walking... and watched them walk through the gate and into school together. They were talking about something, God knows what.

But I didn't care what. They were talking.

And without play group, I don't think it would have been possible.

Peace,

Jay

P.S. I highly recommend finding a local play group in your area, and get your aspie kid there once a week if at all possible. A center run by autism/Asperger's experts is ideal, but lacking that... find other spectrum parents in your area, however you can, and set up weekly play dates with other kids.

Five Ideas to Get You Through the "Rough Days"

2009-06-08T17:51:00.000-07:00

Being a parent involves rough days.

No matter how well behaved your kids are. No matter what their level of giftedness or not. No matter how patient you are. No matter how loving your family.

We all have an occasional day where it's just damned hard to be a parent. Where our kids are being jerks and testing us at every turn. And we are coming up short.

Usually, I know I'm having a really bad day when I actually lose my temper with NJ. This happens very rarely these days. But when it does, I always feel so helpless. I just want to scream and yell and throw a temper tantrum.

Indeed, some theorize that your author is an aspie as well! And I don't deny there are certainly some eery similarities!

But here are five little things to think about when you're going through such a day... when it seems like the ESE coordinator doesn't get your kid, and your kid doesn't get you, and you don't get his teacher, and the cable goes out so there's no Spongebob.

1. Some of the world's greatest humans were either diagnosed with Asperger's or have been posthumously associated with AS. They include Albert Einstein, Thomas Jefferson, John Robison, Dan Akroyd and Bill Gates. Yes, there are surely aspie morons out there, just as there are morons in every walk of life. But I doubt your kid is one of them.

2. Aspies often tend to improve with age. The traits naturally mellow as the person figures out the world on their own.

3. We are in a position to help, as parents, and it is an honor to do so... Remember when you were a kid, and what would have helped you during such difficult days. If you could go back to a difficult day in your childhood and parent yourself, how would you talk to the little "you"? What would you do or say to help little "you"? Then do that with your little one.

4. There is a LOT of support out there for you. Other parents of aspies or autistics, other parents in general... Psychologists, support groups, online groups, John Robinson's blog, Temple Grandin. You name it. Remember that all you need to do is start reaching out. I hope this blog can be part of that support. Check out the other resources for aspie parents and remember that you need support as much as your kid does.

5. We are blessed to have kids with Asperger's. They are extraordinary. For every area where they might be behind their peers (team sports, socialization, etc.), they might be ahead in another area (individual sports, rugged individuality, native intelligence, creative thinking).

If you can think of any other inspirational thoughts you'd like to add to this list, please do.

When we have the hard days, the rough days, the main thing I try to do is keep an even keel and keep an eye out for signs of a benevolence beyond definition, and sometimes beyond my own human understanding.

Peace,

Jay

An Interesting Brunch...

2009-06-07T10:17:00.000-07:00

So this morning, NJ and his mother and I decided to go grab some brunch at the local 50's diner, Ellie's.

Cute place. Our hostess, oddly, was the same woman who served NJ's hotdog at the beach yesterday. The hotdog that will always go down in our family history as infamous for first... claiming NJ's loose front tooth, and then accidentally putting it in my mouth when I tried to steal a bite of his dog later in the meal. (Story for another post.)

So we're just having our regular time with NJ. Now that he's six, he's pretty good in restaurants.

He was also playing some Sims on my Blackberry, and generally just being an agreeable little fellow.

At one point, he picks up a piece of bacon and goes into a hilarious story about "Oh no, the Horrible Bacon Monster is attacking the city." NJ's really into super heroes, rescue scenarios, good guys, bad guys and the like right now.

The woman in the booth behind us turned around and smiled.

So after the meal, Mel gets up to go to the bathroom. And this woman gets up and walks over to our table, and I'm like - oh crap. Here we go. She's a nice looking woman, probably late 40s. Shortish, curled brown hair, slender, mildly serious bearing. She kind of leans toward me and says:

"I hope I'm not out of line by saying this..."

I am thinking: Oh boy, Jay, just keep cool and listen. Just deal with it calmly.

And she says:

"I'm a school teacher and I just wanted to say: you guys are wonderful parents. The way you talk with him, and how well behaved he is... you just don't see that a lot anymore."

I almost fell out of the booth. I didn't know what to say.

I was like: "Wow, thanks so much." I asked her specifically what had impressed her, and she just said: "You have a really good way of talking to him, and you can see it in his behavior."

It flickered in my mind to tell her NJ's an aspie, but I thought: Why? Why not just accept the compliment and be grateful? Everything isn't about Asperger's all the time. Despite what you might see on this blog, I don't sit around thinking: hey, my aspie son just did that, hey my aspie son just did that.

I only write this way to relate to you more directly.

Meanwhile, when Mel came back to the table, I told her what had happened. And the lady made a point to tell Melissa herself as we got up to go.

She wasn't being weird or intrusive at all. She was very calm, and apparently impressed with our interaction with NJ. It was really something else.

It just proves how arming yourself with information about Asperger's... communicating closely with your kid... demanding politeness... making sure you're showing love... and a bit of luck (NJ's not always so polite in restaurants)... can go a looong way.

That said, it's definitely a journey. If you aren't having smooth mornings at the local diner with your kid, never fear. We used to endure those wacky outings with great regularity.

There was a time when I would be gulping down my grub, just hoping we didn't have a major incident. That was standard for lunch out with the boy.

Not any more, thank goodness.

But that could also just be a product of his maturation... and mine, too.

An Aspie Day at the Beach

2009-06-07T07:25:00.001-07:00

Living in South Florida has its advantages - many.

Probably the main one for us is living near some truly remarkable beaches.

There's nothing quite like a good beach along A1A. In California, where I was born and raised, the beaches are breathtaking. And there are some truly world-class beaches there, from the broad, wide beaches along the southern coast to the cliff-bound, foggy numbers up north. Stunning.

But when it comes to a casual, hop out of the car and go swimming kind of beach, Florida has the best in the world.

So yesterday, NJ and I went to the beach for a few hours. It was our first time out there in awhile. We both love it.

NJ is turning into something of a big swimmer. He can fly! And he's now starting to swim in three dimensions - diving deep to catch rings, coins and the like.

Here I go again, bragging. Anyway...

So NJ was cruising around digging holes in the sand, swimming around in the waves. It was a perfect day. Blue, clear waters, sunny skies, a fresh breeze blowing.

And I saw NJ in the distance approaching a group of three older boys. These lads were probably between 8-10 years old, and they had built a giant hole. I saw NJ approach and just kinda watched. My breathing paused and went soft as I waited to see: would he be allowed to join them, or would he be turned away?

I saw him talking. I saw them listening. And then I saw them smiling.

They got it - this little guy is really smart and sounds like a tiny professor.

And they let him jump into the little sand pool they had dug out of the beach, and that was now filling intermittently with water.

NJ jumped in and played with them, digging around, just sitting there looking generally pleased. They were doing what they were doing. And all was well.

Eventually, storm clouds rolled in and everyone had to pack up and go.

And I must say, NJ wasn't carrying on long conversations with these kids. He wasn't forming some kind of lifelong bond with them. He wasn't organizing them into a new political party (although he would have loved to, a "kid's only" party of some sort no doubt).

But just making the effort, showing a willingness and taking the risk... those were hugely important.

And this time it worked out.

I've also seen it not work out. Once NJ asked a girl if he could borrow one of her shovels at the beach. She just looked at him rudely and pulled the shovel (an extra one!) near to her and wouldn't let him borrow it.

"Jerk!" I thought.

NJ didn't mind all that much. He just moved onto the next thing. I think I'm going to start talking to him about this kind of stuff. Sometimes kids will respond positively, sometimes they won't. Their reaction doesn't matter as much as your willingness to continue learning how to communicate with them on their level... and that you keep trying.

He's so worth it, and he's got so much to offer.

Peace,

Jay

Aspies and Rudeness - NOT Two Great Tastes that Go Great Together

2009-06-04T19:54:00.000-07:00

Rudeness.

Is there ever an excuse?

I imagine some would say yes. If a kid has AS, you've got to give him a break. It's possible that he's naturally willful, self-oriented, and not very considerate of other people's feelings.

Hey, he's an aspie - he can't help it!

BULL.

There's never an excuse for a child being rude, to adults, teachers, parents, or other kids.

NJ is naturally a very compassionate kid. Like all aspies, he has some of the classic traits, but he also lacks some of the other classic traits.

For example, NJ likes to monologue. He loves to talk. Sometimes, he's still pretty one-sided in his conversations.

He's also something of a control freak. He likes to be in charge. He likes to give orders and arrange the puzzle pieces (and sometimes the people) in the way he deems most satisfying.

Some of this is aspie stuff - some of it is merely inherited from his mom and dad.

Mel and I are both control freaks! So does that mean we passed along those genes to NJ? Probably. Sometimes, the line between simple inheritance and "aspergian" behavior patterns blurs. I tend to think (just guessing) that our son's aspie diagnosis is the result of genetic alchemy more than some external factor.

He's just got a certain mixture of our genes, and that mixture has created an incredible little person who can be alternately stubborn, selfish, loving, gentle, snuggly, imperious, brilliant, original, surprising, bold, assertive, awkward, maddening... In other words, he's human.

But regardless, there's one thing we will not tolerate, and that is old-fashioned rudeness.

If he's rude, we correct him immediately - and make sure he understands that it's not acceptable. If he continues (say, badgering his mother), then we use the 1-2-3 Magic method, which has been a lifesaver.

When the infraction begins, you simply give a warning. Then you say:

"That's 1."

If he continues:

"Okay, that's 2."

If he continues:

"Okay, that's 3... You get a time-out."

We've just switched from time-outs being the big ramification, to "no more Nintendo today."

You better believe that gets his attention.

Anyway, one of our main hopes is that NJ integrates reasonably well into society in general. We believe he will find his niche. But we also believe that being part of society means you must understand the importance of politeness.

Temple Grandin, the amazingly talented and beautiful writer, speaker and humane farming engineer, says that rudeness should NEVER be tolerated. We should never make excuses for our aspies.

And I am beginning to understand that the reason we can't let them get away with it is... we love them too much.

Why I Consider Tony Atwood the Leading Asperger's Expert

2009-06-03T10:39:00.000-07:00

As an aspie parent, I've read tons of books about Asperger's Disorder.

Some of them, I have simply thrown away. They're full of categorical statements, overgeneralizations, and lots of doom and gloom parading around as "let's get real" honesty.

Beware of writers and "experts" who talk in categoricals.

In other words, making statements like:

Asperger's teens can't make friends. They lack the social skills required.

Instead, look for writers who understand that there are as many different definitions of "Asperger's" as there are people who have Asperger's. In other words, look at the individual, not the diagnosis. The diagnosis and formal definitions of Asperger's should only inform the way you approach the individual.

One aspie might actually be great at sensing other peoples' emotions, while another is less aware, emotionally. The mixture of traits, the degree each expresses itself, and how they all work together with the person's basic personality mean generalizations are dangerous when it comes to working with aspies.

Writer Tony Atwood is careful never to make generalizations.

He will write something like:

Many AS individuals have difficulty with maintaining friendships.

That's very different from some writers, who say things like:

AS sufferers lack the ability to form friendships.

Atwood's The Complete Guide to Asperger's Syndrome is far and away the best book I have read on the subject. It's comprehensive, rationale, yet the underlying tone is therapeutic and hopeful. At least that was my take.

Atwood seems like a fascinating guy in general. He's a former Brit who now lives in Brisbane, Autstralia. He runs a clinic for AS people.

And he's a huge Brian Wilson fan!

If you're an aspie parent, I strongly suggest you get to know Atwood's work. He's amazing. I believe he's a true advocate for understanding AS, and for helping the world to understand as well.

Much more to come on Tony and his work in the future.

In the meantime, if you're reading a book about AS and find yourself getting depressed, you might consider throwing it away - like I did!

Signs Your Kid Might Be an Aspie

2009-06-02T06:36:00.000-07:00

Amazing.

Looking back, the signs were there. But since aspies look normal, behave normally (whatever that means) and often are highly intelligent, they're easy to miss.

For example.

When NJ was a toddler, he was fascinated by... toilets.

In any restaurant, he'd want to go to the bathroom.

"Daddy, let's go to the bathroom."

"Okay NJ, you gotta go?"

"Yeah."

So we'd shoulder past the patrons, the waitstaff and push into the restroom.

And NJ would walk up to the toilet and flush it.

"NJ?"

No response.

"NJ? Do you actually NEED to use the bathroom?"

"No."

"What kind of toilet is that, NJ?"

"It's an Elger."

Three more flushes. "Okay, let's get back to the table and finish lunch!"

Hmm.

I guess it should have been "obvious" - but I just thought he was fascinated by toilet technology and branding. A budding plumbing mogul. (Parents...)

Today, it's Spongebob, video games, reading Captain Underpants and swimming at the YMCA. In fact, while he does have passions (special interests, as they call them), they are many. And they don't include all things toilet...

Although I must admit, NJ does LOVE potty humor.

Just like his dad.

An Aspie Milestone - Kindergarten Graduation

2009-06-01T11:18:00.000-07:00

This morning, I had the experience of watching NJ graduate from the local kindergarten.

He goes to public school, and the teachers the ESE folks there are incredible.

NJ functions very well in class, although he kinda complains a lot sometimes. He's rather be home - but so would a lot of kids.

Anyway...

As an aspie, NJ sometimes has trouble following the rules. He doesn't see the need to march in lockstep, for example. He marches to the beat of his own drummer, in his head, and with his feet sometimes too.

So I said a little prayer beforehand: "God, please just let me accept whatever happens. And please help me stay in my seat if NJ does something goofy, like grabbing the microphone and telling everyone about Spongebob's latest adventure!"

Well I am happy to report that NJ did a fantastic job. He followed the whole procedure to the nose, and when he was handed his certificate, he began reading it right away.

He was so proud when he came over to show us after. And yes, he did walk away from the group to do so, but at that point we didn't really care.

He went right back over and got into the class picture. And he also graduated beside two little friends - Declan and Rohan - who he has forged actual friendships with this year. They've had playdates, they call each other friends, they share stuff, and we also happen to like the parents a lot. That helps.

So NJ, our six-year-old aspie, graduated. And he did it alongside two friends. While aspies do have difficulty making friends at first, they can do it. Just patience, opportunities, repeated exposure and like-minded kids will help your little one forge even a "mini friendship".

And that's the start right there.

HOOK UP with other parents, both of aspies and autistics, and neurotypicals. Branch out. Do NOT let AS isolate your child, your family, or you. That is a big mistake in my opinion.

John Robison, aspie author of the bestseller "Look Me in the Eye" said that the first seven years or so were very important. His mother kind of forced him to open up to the outside world with playgroups, social groups, etc. He said in his book that he could have gone either way - so let's keep in mind that we CAN influence how our aspies progress. (Robison's book is must-read, whether your an aspie family or not.)

It's a balancing act - keep expectation down, but hopes high. And do the work, and don't accept the idea that your aspie can't make friends, can't play an important part in his school, or can't indeed surpass his peers in many ways.

In fact, a local kid here in Palm Beach County - an aspie - just graduated his high school class.

He was the valedictorian.

There is hope. And more.

Jay

Why I LOVE Being an Aspie Parent

2009-05-31T19:41:00.000-07:00

The other day I took my son NJ to the YMCA.

It was such a typical example of how amazingly cool aspie kids can be.

For starters, he really wanted them to turn on the giant water slide. So he asked me:

"Dad, can they turn on the water slide?"

See, here's the thing. Normally, I don't like to ask people for stuff like that. I don't like to "bother" people. I'm happy to cruise along, and half embarrassed to ask for stuff - unless I actually NEED it.

NJ doesn't have this hangup. He's very direct. And he's very confident. And as an aspie, he's also learning to communicate in a remarkably clear, simple way.

There's not a lot of beating around the bush.

Anyway, back to the story...

They were having a swimming class so I was like: "NJ, they're having a class. I don't think they can turn on the slide." He looked at me askance. "Okay, go ahead and ask, NJ. But please be polite if they can't do it."

So he swims away from me to the lifeguard stand. I see him talking with the lifeguard and gesticulating with his hands and negotiating (Jesus, this kid can NEGOTIATE!).

With aspie communication with neurotypicals, there's always a little question mark - how's this going to come out? The main thing I want to see NJ do is get his needs met through communication. And he's getting better at that every day.

In fact, his asperger's, I feel, actually removes some of the normal social fear and shyness a lot of kids have. If it's channeled and tempered by pride and social skills training, aspie kids can communicate very powerfully and directly.

I don't buy into this BS that aspies are doomed to a life of no socialization, no chances at leadership, and isolation. I guess it depends on the person, but NJ's not doomed to these things.

So I ask him: What did you say?

And he said, "He said he couldn't do it because there was a class. But it was okay. I said, 'Maybe after the class we can talk about it again.'"

I was like: "Wow, perfect NJ!" Meanwhile, I figured no slide.

But about 20 minutes later, the lifeguard sidles over to us and asks if he still wants to go on the slide. We say yes! The class had ended, so he turned on the big waterslide for NJ and this little girl who was there.

He and the girl, Anna, wound up going down this slide for about a half an hour.

I noticed that he would come down and then wait for her (only an Aspie parent can understand how happy this made me).

When I realized they were really going down together, and that they were talking on the walk back up the steps... and that NJ was really enjoying the hell out of playing WITH Anna (who was about two years older)...

Well, I was standing there with tears in my eyes.

These small victories are things most parents will never get to enjoy - not like aspie parents.

When I first learned of the aspie thing, I was really upset. I was devastated, to tell the truth.

We felt so isolated, so confused, so scared. I thought it was the worst thing that could have ever happened. There was denial, shame, etc.

Today, there's nothing but constant amazement, new challenges, and growth. Yes, every once in awhile there's some sense of longing for him not to have any challenges - to just coast through life. But then he does something that only an aspie kid would do - something absolutely freaking awesome - and I think: my son is perfect.