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Imminent Burn-Out? (Part 2—Rachel’s Experience)

  • Posted on November 16, 2011 at 12:00 PM

So, I knew I was adjacent to the autism spectrum and I thought I knew what that meant. Then, I read Rachel's book The Uncharted Path.

As the full title, The Uncharted Path: My Journey with Late-Diagnosed Autism, implies, Rachel was not diagnosed as a child. Rachel lived for 50 years with no explanation for the ways she experienced life. Essentially, Rachel passed, or strived to pass, as neurotypical—for 50 years. She coped, she lived a successful life, she had relationships, she had a child, and she had a career—for 50 years.

Then, she started researching autism in regards to her father, and that sense of similitude that maybe it applied to her as well crept in. This search for answers culminated with an official diagnosis:

After a half-century of feeling invisible, unworthy, and utterly strange, I wanted someone else to see me, to hear me, to understand me, to take me seriously, and to not send me away until I got a label that made sense. (UP, page xiv)

Sure, she struggled. Sure, it was work. But she coped. Self-doubts (I am oh-so familiar with those) aside, she coped for fifty years!

I used to be able to do so much. I could get up in the wee hours of the morning, drive long distances, go grocery shopping, work full-time at a demanding job, teach my daughter, support my family, pay the bills, cook the meals, clean the house, plan birthday parties, include all the neighborhood children in our holiday celebrations, exercise, and do just about anything anyone asked me to do, except stand on my head. (UP, page 98)

And then, she burned-out. She stopped coping. She lost functioning.

Those times are over. I’m sad that they’re over, and I’m also very relieved. I’m finally learning that I am not an infinitely renewable resource. Walking through the world and taking care of myself is a lot of work. I have to use my energy wisely. As I experience the effects of a lifetime spent defying the way I was made, taking care of myself is the most vitally important work I can do. (UP, page 99)

Rachel describes the differences between what she used to do and what she could do as she wrote her book in vivid detail. I felt a familiar similitude to her experiences growing up and becoming an adult—working hard to be a success, but always being a bit different, standing out in a way that’s not conducive to social success. I felt a similitude to that woman who pushed herself so hard and did so much for others—career, family, friends. I understand, because I do it. I’m living that life right now. And I get tired. I run out of spoons.

And that’s where the fear comes in. Rachel’s words, “not an infinitely renewable resource,” were something of a blow—a terrible, fear-filled blow to my sense of reality.

What if we have a lifetime allotment of spoons? How many have I burned through? How many do I have left? Am I going to crash and burn?

Not Passing

  • Posted on September 7, 2010 at 6:50 PM

Earlier this year, I finished up four years of college in pursuit of a bachelor’s degree.  It was a great accomplishment for me, but it also thrust me into uncomfortable territory.  During those four years, I went to campus once—and that was just to take the test to get in.  Even my graduation ceremony was held off campus.  All my classes were online.

But graduate school will be different.  In order to get the graduate degree I want, I will have to take most (perhaps all) of my classes in person, on campus, amongst my fellow students.  Yes, that’s right.  I will actually leave the comfort of my own home and go out amongst strangers.

Now, I’m not sure how aptly “passing” applies to my situation.  As I’ve said before and will undoubtedly say again, I have no diagnosis of autism and, unless the medical services structure catches up, I’ll probably never be evaluated for a diagnosis—as things are now an adult diagnosis simply requires too much effort.  So, I’m not deemed to be on the autism spectrum.  However, I’m not neurotypical either.  Along with a history of mental health issues (depression and anxiety, mostly), I experience sensory stimuli differently from most people—something I was only able to figure out after my children were diagnosed with autism and sensory integration disorder.  Since I have figured it out, I’ve been able to consciously develop coping mechanisms.  I’ve thrown off the shackles of not-coping and use the coping mechanisms that allow me to be who I am without being overwhelmed, at least when I’m at home.

But what should I do about graduate school?  On the one hand, part of the purpose of attending a written communications program and getting a graduate degree in writing is to participate in the writing community.  You meet people who write and that helps improve your craft and also improves your long-term chances of a making a living writing by finding people who take an interest in your work.  That’s the idea anyway.  Fitting in (thus blending in) has something to do with that—not that I’ve ever understood what that really means or how one really goes about it, but it seems to be how our society works. 

On the other hand, my odd-seeming coping mechanisms help me concentrate.  They help me focus my mind on what I’m listening to instead of being distracted by the background sounds or the sensations of my own body.  Strange places can be very distracting with their white noises that aren’t my white noises.  If I can’t cope, then I can’t concentrate, and if I can’t concentrate, then I can’t learn—so what’s the point?

Besides, I’m more or less comfortable being who I am, so why should I hide that when part of being who I am makes me the writer that I am?

So, I made a conscious decision not to pass.  My first day in class, I took off my sandals and sat in my chair with my legs folded under me.  I got a few, brief looks, but that was about it.  I organized myself using a few different strategies that work for me.  People noticed, but nobody seemed to care.  I thought to myself that I’d be okay as long as nothing major happened.

Then, one day, I was talking with one of my peers when there was a malfunction with the multi-media equipment.  The equipment emitted a loud, long, high-pitched whir.  Everyone was annoyed.  I was beyond annoyed.  This was a sound I could not tolerate.  The sound crashed into my head and shattered every single thought like glass.  The shards of glass cut into my brain.  And everything hurt.  The sound was physically painful—not just to my head, but to my whole body.  It cut and cut and cut into me.  And when everything was cut to pieces, the sound cut the pieces to pieces.

I covered my ears just like I’ve seen my boys do so many times and I cowered in on myself.  I squeezed my eyes shut as if I could squeeze out the sound.  It seemed the whole world disappeared, except for the sound and my need to block it out.  But it still made its way into my head—weaker now with my hands over my ears—and it still hurt.  I don’t know if I made a counter-sound to try to drown it out.  I might have, but I don’t know.  I couldn’t think.  I couldn’t plan.  I couldn’t strategize.  For those long, drawn out moments, the rest of the world was just gone.  It was like my entire nervous system was in melt down mode.

And then, after several minutes, the sound stopped.  Nobody stared.  Nobody did anything.  The peer I was talking to simply resumed our conversation where we’d left off when the sound started.  However weird my behavior may have seemed, I was accepted just as I was.  No snide comments.  No put-downs.  No weird looks.  I was just accepted.

Maybe it’s that I’d already talked about my kids by then.  Maybe it’s that my peers are, for the most part, older than your average college student.  (The median age at my school is 38.)  Maybe it’s that one of my peers worked with kids on the spectrum and another is a psychology professor.  I don’t know.  But I’m not worried about whether I made the right decision in not passing any more.  I’m much more concerned about making an effort to be social—but that’s a whole different thing.