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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?

Imminent Burn-Out? (Part 1—Where I Stood)

  • Posted on November 14, 2011 at 11:29 PM

I recently finished Rachel Cohen-Rottenberg’s books, The Uncharted Path and Blazing My Trail. I’ll do a full review of each book, I promise, but those will have to wait. Right now I must address one urgent issue particular to those adults who either are on the autism spectrum or those who, like me, are close to being autistic, but don’t quite meet the diagnostic requirements.

As I’ve said before, and will again, I have many of the traits attributed to autism, including sensory processing difficulties, language processing peculiarities (a marked difference between speech skills and writing skills), and social processing difficulties. Were it not for the facts that autism (as it is defined by society) is a disability and that many people with legitimate diagnoses of autism struggle much, much more than I do (including all three of my children) and that I feel expressing my experiences as being equivalent to their experiences would detract from their struggles…were it not for these things I would feel wholly comfortable calling myself autistic.

Before I discovered autism in order to understand my children, I had never really understood what set me apart from my peers. I never understood myself. I’ve never felt I belonged in a community better than I belong with autistic adults. While I’ve always (as far as I can recall) understood that people have different gifts and different abilities, before I discovered autism I’d always more or less assumed people experienced the world in more or less the same way. I just wasn’t very good at coping with it.

Compared to the ideal neurotypical, I’m still not good at coping with it. Compared to the struggling autist, I am quite good at coping with it. And, that’s the thing. As far as I understand current diagnostic standards, I don’t qualify for a diagnosis of autism because I cope too well. I’m not disabled. Sure, coping is hard work. Sure, there are some days when I just don’t want to cope with the outside world. There are days when I dread answering the telephone, and would much rather the person trying to contact me via a letter or an e-mail. Sure, I freeze in social situations most people take for granted. But, when it comes to traversing my day-to-day life, and getting by in the world at large, I can cope more or less successfully.

(This is not some sort of gloating self-congratulatory baloney. There is absolutely nothing wrong with being disabled—except for the lack of acceptance, accommodation, and appreciation from the world at large, but that’s a problem with the world, not a problem with being disabled.)

The point is that I cannot, in good conscience, consider myself disabled. I struggle, but I can cope without the kinds of accommodations others need to cope. Sure, those same accommodations would make coping much less work for me. But I can do it on my own, with my own self-provided coping mechanisms and accommodations. There are many people who can’t and they deserve the focus of the autism community much more than I do.

I’ve struggled to communicate this position of being between to my readers, my family, my friends, and anyone else who has a need to know or who just might be interested. I was confident that I’d gotten it down (though there are still those who want to call me autistic and those who are offended when I consider myself close-but-not-quite).

But, perhaps it was time for my understanding to change.