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

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

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

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

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

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

When NOT to Punish an Aspergian Kid

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

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

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

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

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

And I immediately recognized it as legitimate aural overstimulation.

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

In other words, when he's:

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

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

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

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

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

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

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

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

So we were halfway through this lovely weekend.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

His mother got some headspace of her own.

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

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

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

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

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

And we did.

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

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

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

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

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

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

Why We Shouldn't Lose the Aspergers Label

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

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

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

The answer to that question would appear self-evident.

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

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

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

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

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

Upon what assumptions is she basing this opinion?

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

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

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

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

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

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

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

So here's what I would propose.

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

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

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

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

I think that's a mistake for several reasons.

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

But perhaps just as important are the cultural ramifications.

Here's what I mean...

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

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

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

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

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

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

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

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

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

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

Farsighted or "High-Functioning Blind"?

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

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

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

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

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

I tell him "I am blind."

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

"But I'm HIGH-FUNCTIONING blind!"

Too late.

Blind.

Autistic.

Similarly severe terms on a cultural level at least.

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

It has nothing to do with vanity - only accuracy.

I am wondering...

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

Of course not.

And here's something important, too.

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

I am arguing a cultural point here, too.

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

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

It is a useful distinction to make.

More to come on this topic in the future.

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

Please let me know your thoughts.

Peace.