Journeys with Autism

I’m so excited! I’ve never been tagged before—I mean, not since grammar school, and that was back in Roman times—so I am totally stoked.

Both Karen at Solodialogue and Laura at Life in the House That Asperger Built have tagged me for the same meme. Does that mean I’m doubly cool? And doubly popular? I choose to think so.

And best of all: It’s a book meme. In other words, it involves those interesting delivery systems that consist of print on media called pages. And those pages are bound together. And you turn the pages. No, not in virtual reality. In reality reality. How cool is that?

Here are the rules for the meme:

1. Take a picture of the books you are reading currently and add them to your post.

2. Describe the books and if you are enjoying them

3. For every book you are reading, you have to tag one person.

4. Leave the person a comment letting them know you tagged them.

Fortunately, I’m nearly always in the middle of several books, each of which has the benefit of my hyper-focused brain until I decide to hyper-focus on something else. So, I have four books to share. Here goes:

Delightfully Different, by our very own D.S. Walker, is a wonderful novel about a young girl named Mia and the challenges of being different. I won’t give away the story, but suffice it to say that it’s told with warmth and sensitivity.

Veiled Threat: The Hidden Power of the Women of Afghanistan, by Sally Armstrong, tells the story of the fate of Afghan women under Taliban rule, and describes the courage of individual women who risked everything to bring education, medical care, and emotional support to their sisters in an environment of overwhelming injustice and oppression.

Anatomy of an Epidemic: Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America, by Robert Whitaker, is an outstanding book about the development of psychotropic drugs and their impact upon mental health. His chapter on benzodiazepines is especially good—and I say that having recently survived an eight-month taper off these poisons. He outlines their detrimental impact on the mind and body, along with the immense difficulty (and for some people, impossibility) of withdrawing from them.

And There Was Light, The Autobiography of Jacques Lusseyran, is an absolutely incredible book. It’s written by a man who was blinded in an accident as a child, and who grew up to become a leader of the French Resistance during World War II. One of his gifts to the Resistance was his ability to decipher the intentions of others; whenever someone wanted to join, the person would have to sit with Jacques, and he would decide whether the person was trustworthy. In addition to detailing his anti-fascist work, the book describes the intensely beautiful and mysterious ways in which his other senses developed and guided him through the world in the absence of sight.

And now, here are the four people I am tagging for the meme:

D.S. Walker at dswalkerauthor, because she’s a book lover, too.

Lili Marlene at Incorrect Pleasures, because she’s always got something interesting to talk about.

Chavisory at Chavisory’s Notebook, because she always has such sensitive and intelligent things to say.

SpectrumDeb at PlanetSpectrum, because she likes blunt people, and I like the way she writes about her son.

© 2011 by Rachel Cohen-Rottenberg

This fall, I had the good fortune of reading Kate Goldfield’s book Common Scents: Adventures in Autism and Chemical Sensitivity. The book concerns itself mainly with the past five years of Kate’s adult life. Her chemical sensitivities forced her departure from college with only six weeks left until graduation, and in the years since then, Kate has taken a long and winding path toward finding a safe place to live while also dealing with Asperger’s Syndrome and its attendant anxieties.

The book begins with short vignettes from Kate’s school years: her inability to connect with other children, her preference for the company of supportive adults, her years as a target of bullying, and her college life. Kate sets the scene with memories that bring us directly into the most vivid moments of her life and then moves directly into a narrative about being a young disabled woman in her 20s, trying to find independence and a meaningful life.

As I read of Kate’s travels from Maine, to New York, to Montana, to Oregon, and back again, I was most impressed by her resilience. She describes a life of increasing sensitivity to chemicals (such as those found in perfume, paint, cleaning products, and new carpeting), her difficulties in finding chemically safe housing, and her limited ability to enter most public buildings. Far from engaging in self-pity over her challenges, Kate brings creativity, courage, and wisdom to the task of remaking her life. Her description of how to adapt to a disability is especially telling:

When you have a disability, you have to accommodate it, and change your life around it, in a multitude of different ways. At first you say to yourself, “But this is the way it has always been. What will happen if I do it another way?” And then, after you’ve adjusted a bit and accommodated a bit, you find yourself having to accommodate more, and to tweak more things, and you find it increasingly difficult to get around your disability. Eventually, though, you go back to the basics and find very creative ways to accommodate your disability and function in the world around you.

Eventually, as you become more self-reliant, you become proud of yourself for being able to handle so many things. You eschew society’s conventions in favor of what actually works. And you learn to take joy in the simple things….Disability makes you downsize, re-shift priorities, and keep only what’s important in your life. And sometimes, although you want so much more, that can be a good thing.

Into her tale of becoming disabled by MCS, Kate weaves her lifelong story of dealing with Asperger’s Syndrome and all the ways in which it threatens to isolate her. With her characteristic style, Kate insists upon a life of meaning, a life with friends, a life of meeting new people and having new experiences. Although she registers the difficulties posed by other people’s desire for her to be “normal,” she doesn’t let their limiting attitudes stop her. She learns to make friends, to appreciate the people in her life, and to feel satisfaction in the quality—not the quantity—of her relationships.

Kate’s descriptions of life with Asperger’s are especially apt, and I found myself nodding in recognition of our shared experiences, particularly those that entail not being able to read nonverbal social cues. Because both Kate and I share a love of language, we both find ourselves at an impasse when we are unable to tell whether people have understood our words. As Kate writes:

When I talk, I feel like I am throwing words out into a void, hoping they get to their intended destination. It is a production to say anything at all, and when I finally do, I stand there anxiously, trying to figure out how my words have been received. Did the other person understand the words? Did the person comprehend their meaning? Did the words anger the person? Did they make him or her laugh inside? Does the person agree? Does the person disagree? Does the person want to keep talking to me? Can anyone relate? Do people think I’m stupid? What are they thinking?

It’s almost as though I am the producer of my own theatre company in my head; to talk feels like acting, even if I am being myself. I am putting on a production when I try to communicate with others, and if the audience doesn’t applaud, I don’t know whether the show was any good or not. Since I am driven to connect with others, this problem doesn’t stop me from trying to interact with people, but it definitely makes it more difficult.

But Kate’s book isn’t simply about MCS or Asperger’s. It’s a travelogue from the perspective of a disabled person trying to open up the possibilities for her life. I loved reading Kate’s detailed descriptions of small towns in upstate New York, the beauty of the Oregon coast, and the sights, smells, and foods at the many farmers’ markets she found in her travels. Her passion for good cooking, for interesting people, for new experiences, and for natural beauty shines through in this book about growing up and out into the world.

My only caveat about the book is that it could use some editing and proofreading, but these imperfections did not detract at all from my enjoyment of it. I’ve known Kate through her blog, Aspie from Maine, and I’m very glad that I got to know her even better by reading her first book, Commons Scents: Adventures in Autism and Chemical Sensitivity.

© 2010 by Rachel Cohen-Rottenberg