Common Scents: Adventures in Autism and Chemical Sensitivity

Book Excerpt


Prologue

I sit awkwardly on the school bus, holding my Babysitter Club books close to me. I look up at a much older kid sitting across from me. "Do-do you want to be my friend?" I stammer. The kids laugh. I have no idea, at six years old, that this is not how you make friends. I have no idea what the concept of friends really means, other than that other people seem to want them.

*

I am standing on the playground, holding a rubber four square ball tightly to my chest. So tightly, in fact, that the kids around me can't get it. I have a game I play with a teacher every day at recess. I hug the four square ball to my chest as tightly as I can, while he tries to get it and other kids look on. He never can. This goes on for weeks until I burst into tears one day. I am in third grade, and this is the only way I know how to connect with other people.

*


I hide in the coat racks of my sixth grade classroom just before recess, trying to avoid going out. If they don't see me, I can stay in, and go to the library. My teacher catches me. Who else would try to stay in from recess? The only people I can talk to are the women who work in the library. I have nothing in common with people my age.

***

I am in high school now. Ninth grade. I walk with my head bowed, looking at the ground. I have a Walkman I carry at all times, using music to drown out the painful feelings of not belonging. I am trying to recover from two years of being severely bullied and picked on in junior high, two years that ruined what little self esteem I had left. I am scared of everyone around me.

*

Senior year has begun, and I am much more outgoing and confident, thanks to a good summer camp program at Amherst College the summer before. I say hello to people I pass. I have a couple of friends I hang out with after school. But still, I seek out the adults. I stay late in the guidance office, talking to the secretary, after school every day until she leaves at 3:30. I feel at peace, wanted, and welcomed when I am with her. I feel calm and at ease. Julie listens to all my stories and smiles at me. She tells me what she did the weekend before, and we discuss school happenings. When she's not there, I go looking for other teachers to talk to.


***

It is sophomore year of college. I am standing in an empty classroom, tears rolling down my face, crying so hard I can barely speak. I am shaking, almost hyperventilating. My mortified professor stands near me, not wanting to leave me but not quite sure what to do. "Why aren't I like them?" I sob, finally giving vent to all the thoughts I have been carrying around;  a heavy load. "Why don't I want the same things they do? Why don't I like what they do? Why won't they talk to me?" She says nothing, which only makes me feel more isolated, although later on I realize the situation couldn't have been easy for her, either. "Am I unapproachable? Why won't you talk to me?" She finally leaves, and I sit and cry some more. The hard part about college is being surrounded by so many people my age. While they are accepting of my differences and generally good natured to me, I am jealous of them. I am jealous of the way they walk, the way they talk, the way they connect with others so easily. I am jealous of their ability to make friends. I am jealous of how normal they seem, and how clearly not-normal I am. It burns to watch them, because I know I am not like them. And no matter how much I want to accept myself for who I am, when I am around too many of them, this tenuous self-acceptance falls to pieces.

*
I sit at a table in Pearlstone, the Goucher College cafe, laughing with my friends. Malcolm is telling a funny story and Annie is waiting for her turn. I have the New York Times spread around me; I was reading it before they came. I am enveloped in a feeling of peace and well-being, at least for as long as my friends are here. A couple of friends is better than nothing. The depression can come later. I have some friends, at least, and I have my independence. Life is good.  

***
I am sitting in my junior year theatre class, distracted. Why does that girl with the perfume always sit so close to me? I can't think. Whatever she wears is so strong, I swear, once I was in the grocery store and smelled her on the other side of the store. I thought I was imagining things until I saw her pop out of the chips and salsa aisle. I can't focus on what the teacher is saying, so I doodle in my notebook instead and wait for the class to be over.

*
I have just come back from the winter break of my senior year. I come back excited to finish college, but start having problems almost immediately. All of a sudden, people are wearing perfumes and smelly lotions everywhere. All of a sudden, they seem to be cleaning the library doors and windows incessantly. I walk through the library and I smell glass cleaner; I walk to the computers and I practically faint from perfumes and other body care products. I go into the academic buildings, and feel like I'm going to collapse; there's some smell that is so strong, what is it? I run from building to building, trying to find a place I can be. The only place I can tolerate is the basement of the library, so I spend a lot of time there, convinced this will all be over soon, and things will get back to normal. It isn't until my stepmom mentions it that I ever hear the term "chemical sensitivity," and have a label to put on what's been happening to me.

*
I can't stay any longer. I have to leave. I withdraw from my classes and go home.


Chapter One: In The Beginning  

I stand outside a bakery in Burlington, Vermont, looking wistfully through the windows. All kinds of fancy pastries and cookies await on the other side. I have heard this is the best bakery in Burlington, and I would love nothing more than to go inside. But I can't. I can't walk through that door. I try, but the smell of Windex about knocks me out, and even sweets aren't worth getting sick for. Another time, in another city, I stand outside an even fancier bakery in Eugene, Oregon. I crane my neck so I can look through the window and admire the sweets.

This time, I don't even try to go in. Not into the bakery, and not into any other public building in Eugene or any other city I go to. It wasn't always like this. I used to love to go shopping. I'd go in and out of all the stores of the downtown district of my hometown in Portland, Maine, and spend hours at the mall. I'd hunt out every sweet shop in a five mile radius. But chemical sensitivity changed all that. Chemical sensitivity changed who I was, and what I could do; and as a result, I had to change my life quite a bit.    

First, though, back to the beginning. The story starts at Goucher College, in Baltimore, Maryland, which I attended from 2002 to 2006. I was a socially awkward kid when I first arrived at Goucher. Fortunately, going to a small, intimate liberal arts school and getting to know other kids and professors well gave me a lot of confidence. I decided to major in psychology, because I had always loved it. In my psychology classes, we did portfolios of personal writing, research papers, essays on books, and many other creative works to express what we had learned. I loved this style of learning. On the weekends and evenings, I walked into the nearby town of Towson, and got smoothies at Smoothie King, chocolates at Godiva in the mall, and groceries at the local Super Fresh. In addition, I spent hours reading books at Borders. I cherished the independence of being able to go wherever I wanted, when I wanted. I had a couple friends that I spent time with, and a weekend job at the computer lab on campus. Things were as good as they could be. I had always had anxiety issues and issues fitting in socially, due to a form of autism called Asperger's Syndrome, but overall, things were going pretty well.
 
It didn't, however, last. I returned for the spring semester of my senior year after winter break, ready to be done with college. But a few weeks into the semester, I began having the oddest problems. I had always been sensitive to fragrances and strong odors, but I had been able to deal with them for the most part and ignore them when I had to. But now, I would walk into the library and something that smelled like glass cleaner would make my eyes and nose sting, and my brain would shut down; I'd feel like I was going to black out. In my classes, I started noticing and being overwhelmed by the smell of perfumes and lotions on the other students. I'd get dizzy and have uncomfortable stinging sensations that would make me have to leave. The academic buildings became unbearable because of the cleaning solutions they used; when I saw someone with a cart and a mop, I would literally run in the other direction.

Sometimes, I'd spend an hour wandering around campus, trying to find a building I could tolerate. Something was always bothering me, everywhere I went. The thick humidity of the early Baltimore spring didn't help any; I had breathing problems outside, and an array of physical symptoms inside. Pretty soon, I started spending all my time in the basement of the college library, which seemed to be the only place that didn't bother me.  

I couldn't get any work done. I kept thinking I would catch up, but I never did. Eventually, my family convinced me that taking a leave of absence from school would be the best idea. I clearly wasn't going to accomplish anything in this state. My stepmom told me she had heard of other people who were sensitive to chemicals. Thus, I had a name for my problem, and
would later learn a lot from meeting other people who also had multiple chemical sensitivity. People who have this have a wide range of physical reactions ranging from mild to severe to everyday chemicals such as perfumes, cleaning chemicals, lotions, new paint, new carpet, and so on. These symptoms can be debilitating, and for some people, a single exposure to a fragrance can wipe them out for months. Others, like I do, have more immediate effects and feel better when they get away from the offending substance. At any rate, I withdrew from my classes, with six weeks left before I was supposed to graduate, in April of 2006.

What follows is the story of growing up and trying to find my way in the world. Only, I did it while dealing with severe disabilities; Asperger's Syndrome (a form of autism that causes one to have difficulty relating to others socially, difficulty making friends and understanding social language, sensory sensitivities and a general tendency towards getting overwhelmed by simple things), multiple chemical sensitivity (which makes functioning in the world even harder and prevents me from going in most stores, office buildings, and apartments due to reactions to chemicals), and severe anxiety problems. Only one thing remained constant in my journey of the ensuing years: my desire to find a place in the world where I felt comfortable and safe. This is the story of my travels across the country, from my home in Maine to small towns in upstate New York, coastal Oregon, and the mountains of Montana - and it is the story of the people I met along the way, who I will never forget.    

***

....from the Newport, OR chapter:

"Theory of Mind

They call it theory of mind, to use the technical term - many people posit that people with autism have a "theory of mind" deficit, which means the inability to understand what the other person is thinking or feeling; or that other people have different perspectives from you at all. Young kids with autism often are not aware that other people have feelings that are different from theirs, that anyone could possibly see the world in a manner different from them. When you grow up and get older, you (usually) begin to realize that yes, people think in very different ways. And that you need to be aware that people think in different ways, and try to figure out what those ways are, in order to communicate with them. And like I said, you can use logical deduction to figure out what these ways are, but it's an awfully crude method. I read a lot of books when I was a kid. I mean, I read probably five books a week. First kids' books like the "Babysitter Club" books, but I graduated to adult books pretty quickly. I read mostly mysteries, since that's what my mom read, but I read really anything I could get my hands on. I was addicted to the Chicken Soup for the Soul books. Sometimes, I think the only way I learned about human relationships and how to interact with others was from all that reading I did.

An example of a theory of mind deficit that I remember from my own childhood occurred when I was in elementary school. We were going around in a circle, and everyone was supposed to tell a secret about themselves. When it was my turn, I said very shyly, thinking I was revealing a big secret, "I like cats." The whole class burst out laughing. "We already knew that," they gently chided. Of course they knew that. I was obsessed
with cats. I talked about them all the time. I talked about nothing but cats. I had calendars, cat themed books, cat magazines, and cat figurines. It was probably the most obvious thing about me. But I had so little self-awareness, or rather, so little awareness of how other people saw me, of how they perceived me, that I literally, at that time in my life, had no idea they knew I liked cats. I really thought it was a secret! I was so embarrassed. That little slip-up, as minor as it seems, was emblematic of communications problems I've had all my life. I simply can't understand when other people understand me. I have very little sense of how people perceive me. On the one hand, you could say it's kind of freeing; I don't feel bound by social norms that others often find so constricting. On the other hand, not having this understanding means there's a persistent space between me and everyone I interact with. I feel like I am missing half of the available information. It makes me feel lonely, frustrated, and occasionally, filled with despair, because I feel as if I will never be able to connect with people.

One time in college, I walked into a college dorm room; some people I knew were having a get-together and watching a movie. I walked in without saying anything. "Kate, relax," said a girl I knew, "You don't have to be so nervous." I was astounded. How did she know I was nervous? I hadn't said anything! "You could tell I was nervous?" I asked. "Sure," she said. If I couldn't tell someone else was nervous just by looking at them, how could they figure that out about me, I thought. I didn't know you were supposed to be able to do that. Think about it: if your only
knowledge of how the outside world works comes from the way you experience it, how are you supposed to know anything different? How are you supposed to tell someone you can't do something that you didn't even really know existed?

Another example is also a childhood memory; I was at the eye doctor's. I was trying to explain the itchy feeling in my eye to the doctor. "It feels like a foggy, itchy feeling in the right hand bottom corner of my eye," I said, and went on to use several metaphors and add more details. When I was finished, my mom was staring at me.
"What?", I said, scared I'd done something wrong, and slightly frustrated. After all I had said, they still didn't understand what I was saying?
"Nothing," said my mom, "it's just that you described that so well."

I got an inkling then that most people did not use so many words to describe what was on their mind. I would learn that I was great at describing things in words, but horrible at using words in a "social" way that meshed with what other people were used to and could understand. I couldn't use or understand the body language other people used to communicate things more subtly, so I only get about, what, 20% of communication? It is frustrating beyond belief. It feels like you have every word in the English at your disposal, but you still can't get your point across. You can have a functional conversation with someone without having any idea what they're really talking about, without feeling their emotions, without being aware of the subtext involved. You can get through life that way, but I wouldn't advise it. It's not very much fun.  

Living with Kim

So, all that to say, that the relief I felt talking to Kim was nothing short of earth shattering to me. The first night, we sat and talked for two hours over dinner. Sitting at a gorgeous wooden table in this beautiful setting, eating with a lively, intelligent, compassionate woman who was hanging on to my every word, whose feelings I could understand without having to try so hard, was like heaven to me. We sat there for hours that first night. I was almost too tired to talk by the end of it, but I didn't want to stop. If I stopped, it may never happen again. If it stopped, I would wake up from the dream I was in. The first new nights were like that every night, much to my pleasure.

She had the most wonderful laugh I had ever heard; and she laughed a lot. She had a great sense of humor. She was the most joyful and passionate person I had ever met. Those are qualities I truly value in a person: their passion, their enthusiasm, their energy and joy about life. I am the kind of person who has a feeling and an opinion on everything; nothing is too small to comment on, nothing is too small to get excited about. It's just the way I am; but it seems to bother some people. They don't see why a person should be so happy over something so small. "What," they seem to be saying, "Didn't you get the memo? You're supposed to be depressed, like the rest of us." Well, yes sometimes I am, but not about the same things they are. And if a chocolate chip cookie, or a sunny sky, or a good song on the radio makes me happy, I want to share it!
   
Kim had passion about everything; about the people she knew, the food she ate, causes she was interested in, the weather, and so on. I ate up every word. I loved her energy. Her whole soul sparkled. Despite this energy, she was also one of the calmest and most at peace people I had ever met; she was very centered. She worked through problems in a very logical way. Kim was extremely most non-judgemental; she didn't seek to pass judgement on people, no matter how weird the behavior; she only seeked to understand it, and the person, and figure out how she might be able to help. A massage therapist by profession, her healing nature did not leave her when she left the office.

She talked to me in the exact same way as she'd talk to anyone else. I know this because I've been able to observe her with other people, on the phone or elsewhere. I have not ever known someone in my life that treated me the same way they treated their friends. People never seem to know what to do with me. They are always put off by me. They always make allowances somehow for me, thinking they have to either talk down to me or talk in some other unnatural kind of way. They're never relaxed around me. It drives me absolutely crazy and it has all my life. Another thing I've had to learn how to ignore but frankly I've had very little success ignoring it other than just trying to stay away from people as much as I can. To be treated and talked to the same way as other people, is more gratifying than you could imagine. To have her be open with me and talk about emotional details from her life, for her to trust me with that kind of information and want to talk to me about it, is the most amazing thing ever. After being shut out for as long as I can remember from anyone's emotional life - this is like an emotional feast, an emotional tour de force, in a good way.   
 
When I bought two dozen bananas and they didn't all fit into the fruit dish, I made a sculpture out of them, balancing them on top of each other precariously. I proclaimed it modern art. Instead of scolding me about buying too many bananas, she laughed with me.

She never lost her temper, she never even got irritated with me. She never had bitterness or resentment creep into her voice like so many I have known. I told her, after a few weeks, how much I liked her, and she said "Be careful not to put me on a pedestal." Good advice, although I never needed it. Hearing her voice made all my worries my go away. It didn't matter what we talked about.

Most people, even if they're not consciously doing anything, you can see it in their face. As bad as I am reading faces, I can see the disgust, the tension, the impatience, the perplexment, in regards to just about everything I say, in one way or another. You can see it register on their face; you're different, you're doing things differently, why can't you be normal?  In some ways you get used to it but in other ways it never stops hurting. But it's a kind of hurt in the back of your mind you try not to think of much.   
 
But with her, everything I say seems to click and register and she comes back with the perfect response. She validates and appreciates everything I say. Every single thing. Again and again, and I am in awe. How, I think, is this possible? And where has she been all my life? How is it possible I've lived this long and never found anyone I could connect with like this?

I see myself in her. I am so touched by the emotions radiating from her. It is so gratifying to look at her and realize - I understand the emotion she is feeling! I experience it too! To have that feeling of connection and realization instead of a constant feeling of otherness - I have no words for it. She opens something in my heart that feels like it’s been closed for a long time."

 *******

.....from the Bend, OR chapter

"On "Being Normal," and Temple Grandin

It's hard when you try, though, to do everything you can to "be normal," to act normal, to look normal, and you know that you can't. That you're going to come across as different no matter how much attention you try to pay to slowing down the way you speak, speaking more clearly, keeping your body more still and not fidgeting as much. You'll still have "that look" to you.

I wasn't really clear on how I must look from the outside until I watched the Temple Grandin HBO movie from February 2010. It is the story of an autistic woman who grew up to revolutionalize the way cattle are handled and slaughtered, finding more humane ways to do so. The movie perfectly captured her wide-eyed expression, her anxiety and over-reaction to sounds and sensory stimulus around her; the way she carried her body, the way she couldn't modulate her voice, the rapid pace at which she spoke, the enthusiasm that she had at topics that interested her, far more than it was socially "normal" to express. She knew what she wanted in life, and she was frustrated at the barriers to access; both as a woman in a male dominated field and as an autistic person. But she could think outside the box; she kept trying until she got what she wanted. Temple Grandin is an inspiration to everyone, autistic or not.

The part that is relevant here, though, is that there is a definite way that an autistic or Asperger's person comes across. The body language and facial expressions, of course, are completely off. The body is usually stiffer and not relaxed. The eyes show anxiety or terror no matter how much the person tries to smile. The timing of the sentences comes out wrong if the person tries to make conversation. It seems that you can fake normal all you want but it never quite works. In the end, you have to find people who accept you for who you are, quirks and all, not people who will simply tolerate you or hang around you as long as you keep trying to be "normal." No quality of life can be had by pretending. In the Temple Grandin movie, Temple was lucky enough to have mentors and other people who accepted who as she was and worked to expand her mind and mental abilities, even if she was a little socially off. Every autistic person needs support like that.

Temple's character says something like, "I know that I have problems understanding some things, but I still want my life to have some kind of meaning." To me, that was the crux of the film, and of Temple's life. She had the drive to work around her struggles, to learn how to overcome her issues enough to be able to do the work she was good at. She changed the way the cattle industry handles cows. She gave hope to millions of autistic people and their parents. I think she succeeded in her goals.

I have always said the same thing. Problems or no problems, my life has to have some kind of meaning. I can't live an empty life. I'm not the kind who can slack off watching TV all day and be content to live on a government allowance. Everything I do has to have meaning and purpose, and if it doesn't, it has to be geared towards something that will have meaning in the future. One of my biggest frustrations in life is not being able to do more, not being able to participate in the world in the ways that I would like. Not being able to make a difference in the lives of others. The only tool I have is my writing, and I try with everything I have in me to make that count for something. I will, like Temple, work to find the day when I will be able to give more to the world.

Until then, though, I find interacting with people my own age very difficult. Older people, in their 40s, 50s and beyond, seem to have a way of interacting with those who are different that makes you feel, well, less different - puts you on the same level as them, almost. Not all, certainly, but a large percentage of them. They have a way of putting a person at ease, and making the conversation about whatever topic is at hand - current events, skiing, the dinner menu, the weather, a book you just read - rather than a judgement on the way you express who you are. They are, in a word, often more mature, more accepting and have seen more of the world; they have come to terms about certain things about themselves; and they have a different view of an awkward young person trying to get along in the world. I hate to make generalizations, but it is entirely possible that most young people have so many insecurities about themselves and their place in the world, which they are trying to hide, that they cannot bear to be with someone who expresses these fears and insecurities so openly.

Not all young people are like this, of course, and while at Lost Valley, on those rare times I could get people alone, they often expressed their vulnerable side to me. Their emotional, "I've had experiences like that, too" side. They talked about difficulties they had had with people or getting along with the status quo, trying to figure out who they were; they talked about what they wanted to do with their lives. I could relate to these people then, and felt more of a sense of connection. But in everyday life, it seems, most people put up a shield to hide their vulnerabilities. They hide a part of themselves, and almost create a persona that they present to the outside world.

This is something that is very foreign to someone with Asperger's. With AS, what you see is what you get. We have a hard time hiding any part of ourselves. Deception is a concept we can't grasp. We can't be anybody but ourselves. We say what we think, we say what we feel, and we do things we are interested in or enjoy even if it goes against social norms. We are honest and literal and see the world in black and white, and we have a hell of a time trying to understand why everyone else is not that way, too.

Others see us as intense. For many of us, it is not that we don't want social interaction or that we're not social; instead, the problem is that we want to connect on such deep levels that others are scared off. This isn't to say that people without AS don't desire deep connections, too, but they know how to "play the game" to get it. They know how to go through the small talk, the "sussing out" that comes when two people are starting to get to know each other. They have a feel for the general behavior expected, and how to "play the game" to eventually build the kind of relationship or friendship they want. People with AS, on the other hand, often throw themselves on someone like a bull in a china shop. They are not aware of all the social nuances that exist when one person interacts with another; and if they are aware, they have no idea whatsoever how to mimic them.

It's like an unwritten language; to decipher it feels about as likely as going to the moon. So they use what they have instead; sometimes, they are hurt by the outcome, and other times, they get lucky and find another kindred soul. I have found that social interaction is all about trying, though, and realizing your boundaries; what you will and won't be able to do; what you are and aren't willing to do. Not expecting yourself to be able to create miracles at a party or feel included right off the bat anywhere. It is about being patient, taking what you can get, and keep trying in different venues until you find someone you can connect with, without too much effort; because life is too short to feel like you are scraping your fingernails against a figurative chalkboard every time you want to have a conversation with someone. Of course, it's also about having enough social intelligence to realize what the other person's boundaries are, too, but that takes time and experience, and is something that most people with AS find quite difficult. You learn; I'm not saying having AS is an excuse not to; but it just takes time."

************************************************************************

To read more, you can purchase your own copy by clicking here.