A Dangerous River of Denial

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

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

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

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

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

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

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

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

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

So without further ado...

Dude.  Dude.  Dude.  Are you freaking SERIOUS?

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

Conspire away, ye drug overlords!  

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

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

Intolerance is almost always directly linked to ignorance.

We fear the unknown.

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

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

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

The title: Autism: Equality's Last Frontier.

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

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

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

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

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

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

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

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

Peace.

More Similar than Different

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

And perhaps there's a little truth in that.

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

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

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

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

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

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

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

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

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

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

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

We had an absolute ball.

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

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

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

Yet... and yet...

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

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

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

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

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

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

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

Yesterday, he even shared a gummy candy without prompting.

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

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

Also, some of the differences are advantages.  

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

Peace.

Snippets of Love

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

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

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

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

But the important thing was where they were driving.

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

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

I disagree.

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

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

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

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

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

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

Don't believe the hype.

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

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

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

Peace.  Happy Sunday.

Considering the GF Diet...

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

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

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

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

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

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

I knew what she was talking about, of course.  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Peace.

Yes, Therapy Can Help Aspies of All Ages

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

Who happened to be totally full of crap.

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

He's so "special."  Aww.  

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

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

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

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

And so do I.

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

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

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

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

Peace.

Keeping It FUN

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

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

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

What fun.  

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

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

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

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

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

It was a fantastic step.  

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

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

Whatever it takes, man.  

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

Peace.

That Aspie Sense of Humor

The report read:

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

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

The tests confirmed that NJ is a good reader.

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

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

It's simply called an absurdist sense of humor.  

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

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

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

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

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

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

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

Tonight for example...

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

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

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

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

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

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

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

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

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

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

Thank you, NJ.

Why I Won't Censor Autism Speaks

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

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

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

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

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

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

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

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

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

Einstein was Autistic

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

Some examples you often hear:

- Albert Einstein

- Thomas Jefferson

- Bill Gates

- Sir Isaac Newton

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

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

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

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

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

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

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

Beyond Parental Vanity and Pollyanna Dreams

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

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

Referring to Einstein, Gates and Jefferson, he asks:

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

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

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

Here's my point.

Why Properly Valuing Neurological Differences Can Help Humankind

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

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

Crazy ideas like: 

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

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

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

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

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

So...

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

An Open Discussion about Values

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

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

It could lead to better treatment and therapies.  

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

And would that be a bad thing?  

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

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

What a depressing way to think about this subject.

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

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

That would be moronic, and mean.

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

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

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

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

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

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

Asperger's in the Mainstream Media

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

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

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

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?

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.