A Word (or two) about the ‘A’ word

I was strolling through my neglected blogroll and came across a flurry of activity over there on the blog of my good friend Xavier.  We have shared the blogosphere for a good long while, he and I and we share a good deal many other things than blogging.  Among them is interest in relationships, gardening and a similar sort of twisted humor.  There is a good reason why we share these things.

He is in a bit of a panic because he believes he might be on the autism spectrum.  Hopefully the panic is subsiding, and if not I will either increase it greatly or perhaps lessen it.

I claim my own space on the spectrum, and have absolutely no problems doing so.  I am one of a growing movement toward autism acceptance, rather than the “autism cure’ crowd.  And this is highly fortunate since my oldest son is also well established on the spectrum.  And for several years before he was born, I actually spent a few years teaching and working with kids on the spectrum although there is no better education than actually having and raising your own child on the spectrum.

Before I go any further, I must say that I need to tread lightly on this topic, not because it is not near and dear to my heart.  But because it is.  I am infinitely more well-known in the autism community.  There may even be a book on the topic with my name in it.

So I am going to speak to the side of autism most relevant to this blog.  And one of the best places might be a fellow blogger or two.  Remember 2amsomewhere?  For a long time he signed posts and comments “behaviorunspecified” or something like that, which was a bit of a reference to “PDD-NOS” which stand for “Pervesive developmental disorder- not otherwise specified” which is a sort of autism-like diagnosis that kids are often diagnosed with when they are very young.  Neurologists avoided “autism” like it was the plague because to many parents that is exactly how it was viewed.  And the media did not help.  But truth is, many, many folks are on the spectrum.  Most of us nerdy types are on it.  If your nerd score is near as high as mine, you got it.  I mention 2am cause he was out there with his spot on the spectrum, but didn’t try to use it as an excuse.  It was just part of him.  And he even attended that little blogger get-together FTN put together years ago when neither you or I would dream of it.

Remember Christian Husband?  I don’t even need a test.

Not all of us on the spectrum are uber nerds.  But almost all of us struggle.  Like Confused Husband.  I think he diagnosed ADHD or something, but I would bet anything he would score on the tests as a likely candidate.  And he had at least one child on the spectrum, I believe.

We got a few things in common, but most noteworthy is the struggle in our primary relationships, and that is where I’m going to focus mostly.  I highly recommend reading anything written by Jerry Newport who is an uber aspie.  I went to a conference where he spoke and it was the first time I realized I had found my people.  He said “You know God REALLY likes autistic people.  Why else would he make all the planets and the universe spin?”  Plus, Jerry is old fart, like us.  Most of the stuff out there is geared toward parents of kids, and paints this horrible picture of autism and how awful.

At this same conference I heard a young woman who talked about how autism and aspergers manifsts itself very differently in girls and women.  And you know a couple of them I would diagnose with that female variant.  One is Arwyn…my wife.  The other would be Autumn, which I would base on the few interactions I have had with her online.  This is not to say they are bad or  broken.  It is to say they need to be understood.

So what does it mean to be on the spectrum?  And why is it such a big deal in the last decade or two?  I have a few ideas of my own, but the good folks who are studying this novel neurology do know there is often a genetic link but they also know there are multiple causes and symptoms.  There is not one simple marker.  As society moves and changes more rapidly, we are seeing more stresses and pressures that did not exist back when most people lived on farms.  Back in those days, aspergery folks might do extraordinarily well in agriculture where the time, pace and space operated in more natural and predictable patterns.  And it did not require great social skills.  People were not expected to make lots of phone calls, and talking a long time was expensive!  Tasks were pretty straight forward, albeit repetitive.  And in school, if you sat down and kept your mouth shut you could do well enough.

Except for the bullies.  There were always bullies.

I’ve known I was on the spectrum for at least a decade.  It’s only been in the last year where I have come to know Arwyn’s particular flavor, even though I think she is in denial.  Hell, I even blogged this crap back in 2005, but failed to make that last, tiny connection.  And even going to my more famous top 10 list (which has been lifted, republished and passed all over the internets) harkens to an almost autistic way of dealing with sex.  But I failed to see it until now.

What this means, once we get a diagnosis for you, me, a spouse or anyone, is that this is a big part of who we are.  It is not something you recover from using a 12-step group, psycho analysis, drugs, chelation or any other horse shit people will try to sell you. Don’t buy it.  They will take your money and you might THINK it is helping….and you will claim it helped cause who wants to look like an idiot for just spending big bucks on crap that didn’t work?

This is not something to be cured.  It is something to be understood and managed.  And my friend Xavier has been managing in fine form for a very long time, albeit in a certain Mr. Magoo-like fashion.  He has blindly gone about his business and done well raising his kids and his garden, taking care of his family just like he always knew he was supposed to.  Jerry Newport alludes to this about his own upbringing.  Everyone knew he was a little odd, but otherwise did not treat him any different.  He was still held to high expectations.  And he is still wildly successful despite also being wildly off-the-wall.  As we get older we get better at managing and compensating.

That routine and preservation of sameness (a cardinal autistic characteristic) is how we manage our environment.  We know we are prone to fits of disorganization, so we put things in the same place every single time so we can find it again.  We wear, eat and do the same things every day because it makes life easy and less complicated so we can devote energy to the variety of things we like.

And people on the autistic spectrum are very diverse.  What is true of one person on the spectrum is not always true for another.  I already pointed out that girls and boys have real differences, but no two autists are exactly alike.  Some have sensory issues, and some don’t.  Some are reclusive while others are gregarious.  And some struggle more than others.  It does not have to define you, but it IS a part of you.  Don’t try to curse, cure or beat it out of yourself.  It is not like cancer.  It will not kill you but it might make you a bit more unique!

In the case of Arwyn, it has helped me accept her more and not be as bothered by her inablity to manage time, space and money.  I will always be concerned, but I am not trying to change her.  And she is done trying to change me.  She is not always trying to get me to socialize more or join in on all the running around, disorganized shopping she likes.  For us, we are better off in separate rooms in our own spaces while still raising our kids together.  In that respect, we do fairly well as a team.  Remember people always seek out others of similar and compatible dysfunction.

So Xavier, go ahead and learn about it all you want but don’t get freaked out.  You gone this long without the label, and adding a tag doesn’t make you anymore or any less of a worthwhile person.  Use it as a tool to better understand yourself and the rest of your family.  But it does not define you.  You are greater than the sum of your parts and this is just one part.

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2 Responses to “A Word (or two) about the ‘A’ word”

  1. Cerridwyn Says:

    This has been an issue that has been close to me of late as well. Particularly after reading and op-ed piece froma father of a child on the low-functioning end of the spectrum indicated that those who are more toward the “Aspie” end (to sum up) are not as disabled as his son, and that they don’t deserve an Autism diagnosis. There was another very old blogger on your blog-roll at one time who had no idea her life was affected by Autism until her child was diagnosed. She still hangs around every now and again.

  2. Xavier Says:

    Eh, I’m not so much panicked as I appear. Just trying to get a handle on it in and amongst all the craziness going on in life ATM.

    I’d say it’s more of a grand realization, a new understanding of what, why, and where. And a great deal of the wisdom my dad passed before he passed, which seemed rather mundane to be honest, now makes a lot more sense in light of this new discovery.

    And so there might be a book, huh? You been holding out on us! 😉

    Drop me a line, I’d put down some money on that.

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