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Sunday, December 31, 2006

What is Autism -- In Conclusion

Why Neurodiversity

Technically it's tomorrow, though I haven't slept yet. My head's rattling, full of thoughts, so I'm just going to get it down and hopefully my head will be quiet. In order to do this right, I have to get very personal and it might not seem to make sense at first, but I guarantee, I'm getting to it.

I was a "good" child. I did well in school, got good grades, worked hard at a variety of small-scale jobs, and was generally obedient. That's why it surprised everyone when I called my house, talked to my brother, and told him, "I'm going to Milwaukee. The car [my dad's car] is at the supermarket. I'm at the bus station and I've got to catch my bus. I love you all." *click*

I don't even think Mark thought I'd go through with it, though he at least got a warning. You see, I lived in southern Minnesota at the time, and Mark was going to college in Milwaukee. Had my father had his way, he'd have driven out there and dragged me back. But, I was eighteen. Still going to high school and still living at home, but eighteen nonetheless. Luckily, it was winter break so I didn't miss any school.

All told, I believe I was gone for a week. When I came back, Mark and I were engaged. I asked him, because he had this pesky rule about knowing someone for five full months first...and I'm not very patient. He said 'yes,' which was mainly a technicality, because we'd been talking about it for quite awhile. This was December 1997, and by March 1998 we were married.

A lot of people were against this. Not Hatfield and McCoy style, but against it nonetheless. You see, Mark was ten years older than me, hadn't "accomplished" anything, i.e. he wasn't established in a career (and still isn't), and *gasp* he had a diagnosis of bi-polar disorder. So, me being the good little girl who had so much to look forward to... It wasn't the right match.

However, I'm also stubborn. I follow my heart. My heart belong to Mark. And if that meant flipping off everyone in both our families... Luckily it didn't come to that. We had our small wedding, despite our families' "better judgement" and we were together. We were poor. We're still poor. And...I don't regret it for a moment.

It's been nine years since I made that grandiose decision in the middle of a Greyhound bus...lets get married, soon! I've come to realize some of those seemingly friendly words of warning held something sinister beneath them. That notion that I was throwing my life away by marrying Mark was not just my father's silly thoughts...those same thoughts were going through the heads of some of his family too. That's a scary thought for me. It really is. While out of the mouth comes, "You can do anything you set your mind to," while at the same time de-valuing him because he had a mental illness...it makes me shudder. It makes me hurt. And it still hurts and humiliates my husband. And that just pisses me off.

I recently learned that one of these "well-meaning" people actually prayed that I would miscarry our first child together, and that when Willy was diagnosed with autism that this prayer was somehow justified. I just found this out. And, it's a good thing. Because, had I known then... Sometimes my tongue gets away with things it shouldn't. It can be sharp as a sword, thrusting true and deep. There's always fall-out, though, so I try to keep it under control. Had I known, I would not have made any attempt to keep it under control. Even now, it's hard.

Why neurodiversity? Why do I value my children, neither despite nor because of their autism, but simply because of them? Why do I value my husband, neither despite nor because of his bi-polar disorder, but simply because of him? Why do I find it so easy to slough off the words of the "experts" and embrace what I know is true in my heart?

The answer is simple. My heart didn't steer me wrong when I got on that bus. It isn't steering me wrong now. I define autism as a human difference, not a neurological/psychological disorder, because I know that disorder is a means of de-valuing human beings much to the detriment of the world. My husband is a very intelligent, talented man...but something inside him is shattered, broken and all that talent and all that intelligence is stuck, trapped by hurtful words and deeds that have broken him down bit by bit over long periods of time. I will happily spend a lifetime helping my husband recover and fly; but I will NOT let my children be cast aside and trampled upon like their father. I couldn't save Mark that horrible injustice, however much I wish I could, but I will save my children from it.

I've seen prejudice in many forms. I've seen many people broken and shattered upon the terrible word, and all that this word entails. I don't like prejudice. I don't like it in any form. And, I truly believe fighting one form of prejudice is fighting all forms of prejudice...just a little bit at a time. This is a worthy fight. It's worthy of my energy and my passion. It's worthy of my drive. It's a superior fight to the fight against autism. I don't want to fight my kids; I want to help them. One of the ways I intend to help them is to pave a way for them, and their father, that is as free of prejudice as I can possibly manage. This, for me, is the fight for neurodiversity -- accepting those who are neurologically different, diverse as we are to accept all other diversity, with love, compassion, understanding and accomodation.

If my way of defining and describing autism seems different than you've ever heard or seen before: GOOD!!! I'm not alone in this, but I am willing to be a voice that gets the attention of those who haven't seen it. I'm eager to be a voice that gets some little bit of attention, better for my children to make their way in this world in their own time. Better for my husband to make his way in this world in his own time. So, yeah, I see things a little differently than many. I certainly see things differently than the medical professionals who deem themselves "experts" of something they interact with strictly in a trial basis. I see autism up close, every day, times three. I live autism, and I'm glad.

My family is neurodiverse and I have absolutely no regrets.

(P.S. If any of y'all want me to do a similar series that is neurodiversity-specific in the near future, just let me know.)


At 12/31/2006 1:36 PM, Blogger mcewen said...

'Neurodiversity' even my American spell checker can't cope with it!

As for neurodiversity specifics - now that would be a challenge.

Cheers dears

At 12/31/2006 1:45 PM, Blogger small town girl said...

This totally rocks!! There is a NEED to talk about this stuff. Mental Illness has a horrible stigma. With a huge trend in "lable-giving and percription writing" in common practice, lives are being destroyed.

The number of persons with diagnosed mental illness had grown exponentauly since the dawn of medications.

LSD was the first drug of choice in the '50's.

At 12/31/2006 9:47 PM, Blogger Stephanie said...

Sorry, McEwen, I should have included a link for that one.

Try http://en.wikipedia.org/wiki/Neurodiversity



At 12/31/2006 9:49 PM, Blogger Stephanie said...


Thank you and welcome! Considering my specific situation, I definitely agree that this stuff needs to be talked about. I'm glad to find so many people willing to listen.

At 1/01/2007 4:22 PM, Blogger David Schantz said...

I think your on to something here and I want to cast a yes vote on that future series comment,"(P.S. If any of y'all want me to do a similar series that is neurodiversity-specific in the near future, just let me know.)"."We were poor. We're still poor. And...I don't regret it for a moment." I've been friends with and worked for some people that live in the big house up on the hill (the wealthy). There is something missing from their lives, love and respect, those two things are worth far more than any amount of money. I've seen those two things in messages Mark and you have posted at your blog sites and in e-mails each of you have sent me. So I wouldn't say you are poor at all. Brand name cloths don't mean nothing.

God Bless America, God Save The Republic.

At 1/01/2007 10:17 PM, Blogger Stephanie said...

Thank you, David. For you, I will certainly write the neurodiversity series, but I will take a bit of a breather first. I'm still sick and it's sapping me dry.

And yes, in the things that really matter, we have wealth untold. However, it would be nice not to have to worry about where money for food and/or our mortgage is coming from each month. I do have hopes that some day my ambitions will come with a pay check. But, I know that that pay check cannot and will not come at the expense of my family. And that is my bottom line!

At 2/03/2007 6:12 PM, Anonymous Anonymous said...

Your article is very informative and helped me further.

Thanks, David

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