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From Inside the Puzzle: Raising a Child with Autism Blog

From the Archives: Muddling the Diagnosis, Part One.

Published July 6, 2012 12:35 PM by Devon Alley
In April of 2004, my daughter's teacher decided to inform me that she was worried my daughter might be schizophrenic. These unprofessional diagnoses have haunted me throughout my career as a mother of an autistic child, so I wanted to share this experience in case others might be able to relate to it.
 
April 20th, 2004:

You know what the best way to start your morning is?

Take your daughter to her "special school," watch her get settled into her morning routine, and then have her teacher inform you that she suspects your daughter might have schizophrenia.
 
...

I am doing less than well at the moment.


Later that same day:

I'm doing better than this morning. Thanks, by the way, for everyone posting your little "whatever, that women is *crazy*" comments to my previous journal entry today. During my breaks and lunches I always check my email via my cell phone (since we're never allowed to actually visit any websites at work because [my company] has the corporate reigns drawn down hard on us) and reading each message significantly increased my mood as the day wore on, so I appreciate it. 

Weird, though. Probably the only time in a long time I've been visibly upset. "Is something wrong?" people asked. "Are you having a bad morning?" And these aren't even people who know me that well.

"Is it that obvious?" I answered in return.

And, y'know, it's silly to let such a thing upset me so much. It's just that... I'd started wondering, myself, a little about A., before this. The fact that she exists in a world of her own, the fact that she has very passionate conversations with invisible people and creatures. Realizing that if we'd lived during Inquisition times they'd have likely stolen her from me and killed her for being a witch and communing with demonic spirits. She does *act* crazy, whether she is or not. And I kept trying to picture her older in my head, and wondering how these tendencies were going to manifest themselves. And what I saw, in my mind's eye, was something akin to a routine-driven Delirium.

So, it's partially that I'd already been thinking on it. It's partially because the teacher who made this recommendation has a son who has schizophrenia, so it seemed likely to me that she could see tendencies I *couldn't* see. And it's partially because schizotypal tendencies run in my family. My grandfather slept with a gun by his bed, was convinced every car that came down our small country out-in-the-middle-of-nowhere road was a robber or something out to get us, that we would go through fits where we was entirely convinced the entire family was plotting against him hoping he would die. [...] I, myself, had an ex-boyfriend help me cover up the screw-holes in the ceiling of my old trailer with glow-in-the-dark stars just in case the Men Behind the Curtain had planted cameras there, and was pretty much convinced I was an actual faerie (or something *just* as special and magical and important) my freshman year of college. Hell, my entire branch of the Wilhoit clan (my grandfather's family) pretty much has the reputation in Greene County, TN, for being a bit "touched in t'head," to say the least. So, the family doesn't exactly have a whole lot of sanity to spare. 

And, I'm still not entirely certain *I'm* always working with both oars in the water. The fact that my immediate reaction to my daughter possibly being schizophrenic is: "it's only because the rest of the world doesn't understand her, and they don't see what we see" and "they only want to medicate her to sedate her and make her an uncomplaining citizen with eyes too fuzzy and blurry to see the truth of things" -- that doesn't exactly smack of rational thinking, either. It takes a lot of work to keep one's eyes the same colour -- and to be honest, it can be damn near miserable, sometimes. 

So, it wouldn't be surprising, really, for A. to have these sorts of tendencies. Which is what bothers me, I suppose, because I don't *see* them in her, but for someone else completely unrelated to *see* them -- someone who has no idea of the history of mental instability in my family -- for someone else to come to conclusions at random that would, genetically at least, make sense... it *is* a little spooky. 

I *do* believe A. is autistic. Her diagnosis has always suited her just find and helped her more than anything else. I think I'm just beginning to wonder how much like schizophrenia that autism is going to look as A. gets older. It's almost like the more verbal and capable she gets, the more crazy she is going to sound and act, or something. I don't know. I'm tired. I desperately need more sleep. And I worry.

Yargh.
posted by Devon Alley

2 comments

I agree. We definitely all need a little crazy in us. :-)

Devon Alley July 10, 2012 9:49 PM

Its actually nice to hear that you have, or had, a little "crazy" in you yourself. Ordinary people are boring.

Kyle Towns July 7, 2012 5:23 PM
Tasmania, Australia

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