A Cure for Asperger's?

Well... here we are, several years down the road.

It's time to update ye olde blog - and the story of NJ.

First, we suspected he was Aspergian about four years ago, when his teacher suggested we get him checked. We never did get an "official" diagnosis, but NJ went into social-group therapy and occupational therapy... oh yeah, and speech therapy. He was fully therapied. 

He worked his butt off, and made great strides. As he matured, he continued making strides -- including making a true best friend, doing sleepovers at other kids' houses and all the rest.

Still, the same social awkwardness persisted. He wasn't showing a great interest in other kids.

But slowly, surely, those things started to change. He forged a bond with the boy across the street, and discovered Pokemon. They would play together for hours. And while their bond was unique, it was real.

We saw progress. The intensive therapy and early intervention seemed to give NJ just enough awareness to start making those connections -- tenuous as some of them were.

We moved to a new state three years ago. His new school put him through a battery of tests -- the two main autism-spectrum tests, to be exact.

The testing went on for more than a month -- in class, out of class, in situ observation, and testing.

Finally, the results came back. Melissa and I sat there, slack-jawed. For years, we assumed he was Asperger's. Heck, he WAS Asperger's. We had already accepted it and moved forward.

And yet here we were...

Suddenly, he didn't test on the spectrum -- officially -- and didn't qualify for services under that diagnosis. 

Luckily (??) he does have a slight hearing impairment and that opens the door for whatever IEP we and the school agree he needs.

But still, while he might not qualify as Aspergian, officially, we know that he -- like myself -- has some of the traits (and most definitely not some of the others). And we'll continue working with him as needed to help him reach his full potential.

Looking back, I thank God we diagnosed NJ ourselves and began therapy immediately. Had anyone at the time told us he was not on the spectrum, we might have remained happily in denial about his needs -- and kept up the pretense that everything was "normal."  And we might never have gotten him into social group, which he obviously needed. Nor would we have had the term Asperger's to prepare scout leaders, teachers and other adult supervisors for NJ's unique personality and approach to life.

I will continue posting updates here... but I am not sure where this is going. Thoughts welcome. I'm sure a lot of other parents have found themselves in this same, strange boat.

How important is a diagnosis, really? And can Asperger's be "cured" through intensive therapy and the natural process of maturation?

Would love to hear what some of you have to say... if anybody's still out there!

Asperger's by Any Other Name...

Well, it has been a long time since I've written on this hear blog.  Many things have happened since then - much water has passed beneath the bridge.

They finalized DSM-V, for starters.  Hey, Asperger's no longer exists, folks!  How convenient.  A whole community, with decades of historic diagnostic and therapeutic modalities built up, has been virtually erased by the DSM committee.  

I believe they have made a really large mistake, and that they will eventually be forced to address that mistake.  But that's for another time.

Meanwhile, we've gotten some very interesting news about NJ.  Not long ago, we moved and he started at a new school here in Maryland.  This school put him through two rigorous autism tests, over the course of about two months.  They supported this with round after round of behavioral observation and classroom diagnostics.  And they came back with some rather shocking news.  According to all of their tests, he didn't actually fall on the Asperger's/autism spectrum.  He has tendencies, but apparently they weren't severe enough to qualify for a diagnosis. 

Luckily, he has a hearing issue that serves as a gateway "issue" in terms of services, and the school can provide whatever he needs in terms of social group, stress-management, etc., based on that.  Thank goodness for loopholes.

In other news, NJ is finishing up the entire Potter series.  He's on the last book with his mother.  He has started his own comic strip and published it on his blog.  He has made a handful of real friends, including two "best friend" types - one a boy and one a girl.  And he's made progress in school, pulling good grades and not getting into trouble, and sometimes - blessedly - reporting actual enjoyment of school.

However, as he turns the corner into double-digits (just turned 10), it's as clear to me as ever that NJ is a unique individual.  He's not neurotypical - he's noticeably different, even if subtly at times.  And that, in all seriousness, is a beautiful thing.

The world needs all types, and NJ brings some serious gifts to the world.  He has an intense sense of justice, which is very typical of the non-neurotypicals among us.  He's very courageous - willing to speak up and in front of a crowd, even in times of stress.  He's also mischievous.  At a recent school concert, the kids were filing off stage and he snuck up to the microphone, grabbed it and made an impromptu fart noise to an auditorium full of hundreds of parents.  The place nearly fell down from laughter.  I was mortified but later got a great laugh myself.  

My point on this New Year's day is this: the label never really mattered.  Whether he's technically on the spectrum or not is hardly the point.  The point is, he's a kid and he needs certain things from us as parents.  Our job isn't to label, and categorize - it's to help the child, not the diagnosis (or lack of one).

So for all the aspies out there - diagnosed, undiagnosed or fully in the closet - I wish you a happy new year, and a year of strength, dignity, purpose and confidence in your identity as someone the world needs.  You have a gift inside and the world needs that gift.  I hope for all of our sake that I, you, NJ and everyone else finds the courage and clarity to bring some of those gifts to the world this year.  God bless, Jay