Pretending to be Normal Read online

  Liane Holliday Willey

  Pretending to be Normal

  Living with Asperger’s Syndrome

  Nothing I ever do, nothing I ever see, nothing I ever feel, nothing I ever know, will ever be as worthwhile to me as are my children, Lindsey Elizabeth, Jenna Pauline and Meredith Madeline.

  I dedicate this book to them.

  Foreword

  Liane’s autobiography will allow others to understand the world as perceived by a person with Asperger’s Syndrome. As a consequence of this condition she is a bewildered stranger in our social world. She eloquently describes herself as one of those «people who never quite find their way, but never quite lose it either». She has a daughter with Asperger’s Syndrome and her child’s diagnosis led to her recognition that she shares the same condition. Liane currently teaches her daughter the strategies that have helped her to navigate her way through, to use her term, the regular world. The value of writing about her lifelong journey of exploration is that those with Asperger’s Syndrome will recognize the same perceptions, thoughts and experiences. She is a fellow traveller. She offers genuine hope for the future in that she has eventually succeeded in finding a partner who understands and supports her. She also has success in her career, and considers that «most of my Asperger’s Syndrome traits continue to fade away».

  Families and friends of people with Asperger’s Syndrome will achieve a new perspective on a child or adult who may not have been able to coherently explain their point of view. Liane is their advocate and parents will turn every page of her autobiography, eager to know what happened next and how she coped, so that they can apply their new understanding to their son or daughter. I strongly recommend this book for teachers as it will provide the previously elusive reasons for behaviours that were considered unconventional or appeared to be abnormal. Specialists and therapists who diagnose and treat such children will find the book a treasure trove of information and insight. I will be using many of Liane’s quotations to explain the nature of the syndrome and employ her strategies to help the individuals that I support. It is interesting that at the end of the book, Liane states that «…no matter the hardships, I do not wish for a cure to Asperger’s Syndrome. What I wish for is a cure for the common ill that pervades too many lives; the ill that makes people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach». This has profound cultural and philosophical implications for everyone.

  When Liane sent me her manuscript, she attached a note that read: «Hope you like the book. Your friend, Liane». Not only am I honoured to be considered her friend, I also consider her a hero whose book will be an inspiration for thousands of people throughout the world.

  Dr Tony Attwood, February 1999

  Acknowledgments

  So many people have touched my life with goodness, most times without realizing it. If it were not for their support, I would still be pretending. My most heartfelt thanks to…

  • Tony Attwood for his dedication to everyone in the Asperger community.

  • All the AS friends I met through the OASIS web site who taught me so much of what I now know.

  • Sarah Abraham and Lisa Dyer for their never ending guidance and support.

  • The Reverend Richard Curry for showing me how to catch the spirit.

  • My favorite friend Oliver Weber for his laughter and his bear hugs.

  • Maureen Willey for being my sister.

  • Margo Smith for being my friend.

  • My mother Janett Holliday for giving me tenacity, fortitude and courage.

  • My father John T. Holliday, Jr for teaching me how to think independently, virtuously and honorably.

  • My husband Thomas Willey, for holding my hand no matter what I do.

  • My precious and perfect daughters, Lindsey, Jenna and Meredith, for giving me the strength that renews me, the joy that lifts my soul, and the love that lets my heart know it will never have to pretend again.

  And finally, my deepest gratitude to the God in heaven who answered when I called.

  Author’s Note

  Tony Attwood, in his book Asperger’s Syndrome: A Guide for Parents and Professionals (1998), offers the point that many adults find they have AS only after a relative’s diagnosis brings it to their attention. So it was in our case. My seven-year-old daughter received an AS label one year ago. Her diagnosis opened the door to self-awareness for my family and me. We had never heard of AS, but once we did, we began to see its traits and characteristics in many family members, myself included.

  I have never been evaluated for AS. To date, I have not been able to find anyone in my geographic area who evaluates AS in adults. But that is okay. I do not really need a formal diagnosis to tell me what I already know. What I do need is more information about how to help my daughter, more information about how to continue my own growth, more information about how to help the public understand AS. It is my hope that those who read this book will begin their own road to discovery, either for themselves or for someone they care about.

  Liane Holliday Willey

  Introduction

  The autism umbrella is vast. Within its boundaries is a wide range of abilities and disabilities; a wide range of differences. It is a fluid diagnosis, one that has no definite beginning and no certain end. Scientists are uncertain as to how it is caused. Educators debate how to manage it. Psychologists are baffled about how to differentiate among its various labels. Parents are not certain how to deal with any of it. And those with autism are too often without any voice at all. Autism touches many, and yet, it is one of the most misunderstood developmental disorders.

  This book peers under the umbrella of autism and looks at Asperger’s Syndrome (AS), a relatively new autism-related diagnosis, first discussed by Hans Asperger in 1944, but generally unheard of until researchers, including Uta Frith, Lorna Wing and Tony Attwood, brought it to international attention in the 1990s. People with AS, like their autistic cousins, have impairments in socialization, communication and imagination, albeit to a less significant degree. According to the diagnostic criteria set forth by Gillberg and Gillberg (1989), people with AS have: social interaction impairments, narrow interests, an insistence on repetitive routines, speech and language peculiarities, non-verbal communication problems and motor clumsiness. That having been said, it is essential to realize that each of these symptoms is manifested in a variety of unique and diverse ways, depending upon the overall abilities of the person affected. Within AS, there is a wide range of function. In truth, many AS people will never receive a diagnosis. They will continue to live with other labels or no label at all. At their best, they will be the eccentrics who wow us with their unusual habits and stream-of-conscious creativity, the inventors who give us wonderfully unique gadgets that whiz and whirl and make our life surprisingly more manageable, the geniuses who discover new mathematical equations, the great musicians and writers and artists who enliven our lives. At their most neutral, they will be the loners who never know quite how to greet us, the aloof who aren’t sure they want to greet us, the collectors who know everyone at the flea market by name and birth date, the non-conformists who cover their cars in bumper stickers, a few of the professors everyone has in college. At their most noticeable, they will be the lost souls who invade our personal space, the regulars at every diner who carry on complete conversations with the group ten tables away, the people who sound suspiciously like robots, the characters who insist they wear the same socks and eat the same breakfast day in and day out, the people who never quite find their way but never quite lose it either.

  The prognosis for those with AS is quite variable. Much dep
ends not only on the person’s ability, but also on the match between the intervention programs and the needs of the AS individual, the support system of everyone involved and the continued committed influence of the medical and educational communities. Yet, prognosis is a very relative term, and as such, I would never attempt to quantify who has a better quality of life based upon their degree of AS. By that I mean, if we are only interested in changing the AS person so that they can better meld themselves into society — a tenuous and nebulous concept to begin with — then perhaps we are misguided. The AS community gives us much cause to celebrate. Never, I think, should we expect or want them to be carbon copies of the most socially adept among us. We should only suggest whatever help they need to insure they have every opportunity of leading productive, rewarding and self-sufficient lives. We would lose too much and they would lose even more, if our goal were anything more, or less.

  Perhaps Tony Attwood (1998) captures this thought best when he says of AS individuals «…they are a bright thread in the rich tapestry of life. Our civilization would be extremely dull and sterile if we did not have and treasure people with Asperger’s Syndrome» (pp. 184–185).

  1

  Remembering When

  There are days when I stand on a precipice, precariously ready to fall beyond whom I am and into someone whom I cannot really believe I ever was; someone I beg never to become again. These are my worst epochs. They are dark and rude and shocking and dangerous. They compel me to issue surrender, to pervade the abyss. There are days when I stand on a terrace, ready and able to embrace new insight and a clean awareness. These are the days that make me whole, for they led me to the understanding that looking back does not mean I will go backward. Remembering can teach me who I am and guide me toward who I will be. Remembering can set me free. Most often I settle on a great divide, carefully balancing my past with my today. I like it that way. I like being able to revisit my past, but only when I bring along a measure of clinical behaviorism. I would never turn back in search of regrets or mistakes or misdirected thoughts. I simply use my past as a catalyst for conscious thought and for self appreciation. Though it has taken thirty eight years, I cannot express what a relief I feel to finally «get» me!

  I remember a man handing me a big fat black crayon. I knew he expected me to use the crayon as a pencil. I wondered why he didn’t just give me a pencil. The crayon was ugly. It was flat. It should have been round. It was almost too big to hold. I didn’t like the way it smoothed itself all over the vanilla paper, it was too slick and messy. But I used it anyway. My mother had prepared me for the visit. She told me I was going to take a test that would tell us how smart I was. She told me not to be nervous and she promised me ice cream when the test was finished. If it weren’t for the ice cream, I don’t think I would have held that nasty crayon. But I did. I drew little pictures and circled sentences and built things with blocks. I knew I was smart and I knew the test was dumb.

  By the time I was three years old, my parents knew I was not an average child. My pediatrician suggested they have me evaluated by a psychiatrist. Several conversations and an IQ test later, my diagnosis was decided: gifted and indulged. Smart and spoiled. With that knowledge in tow, my parents began to evaluate their only child according to a new set of blueprints. From that moment on, everything I did was simply and efficiently explained with a nod, a wink and a «well, she is a bit spoiled» musing. Little did they know.

  When I think of my earliest years, I recall an overwhelming desire to be away from my peers. I much preferred the company of my imaginary friends. Penny and her brother Johnna were my best friends, though no one saw them but me. My mother tells me I used to insist that we set them a place at the table, include them on our car trips, and treat them like they were real beings. I remember going into my mom’s room with nothing more than boxes of tin foil and Penny and Johnna. Together we would make elaborate table settings out of the tin foil. Plates, cups, silverware, serving platters, even food. I don’t remember playing tea party, only that I made the things a tea party would need.

  I also remember playing school with my pretend friends. Each year, after our real elementary school closed for the summer, I would climb in the dumpsters behind the classrooms and dig through the reams of trash to collect old textbooks and mimeographs and workbooks. I wanted real school supplies; pretend items didn’t work in this case. I would take all my finds home and treat them with great respect. I loved those treasures. I can still feel what it was like to open the books so wide their covers touched back to back. I remember the way the book would resist my forcing it to open that far-reaching. I remember feeling annoyed that it would not lend itself more willingly. I liked running my finger down the little valley the book formed at its center when it was opened as far as it could go. It was smooth and straight and calming. I also liked to bury my nose in its middle and smell the familiar scent that clings to books stored among chalk and erasers and paint, and then held by children. If I found this smell wasn’t present, I lost interest in that book and turned to one that did. My favorite find was the old purple ditto worksheets schools used before more sophisticated copy machines came along. I still smell the ink of fresh dittos. I love that smell. The dittos were nice to stack, especially when I had a lot of them. I liked the sound and the feel that came from lightly dropping them up and down between my hands until they met the hard surface I used to help me render them straight.

  Using the materials to teach Penny and Johnna was of secondary importance. Far more interesting to me was the arranging of the supplies. Like with my tea parties, the fun came from setting up and arranging things. Maybe this desire to organize things rather than play with things is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment. They did not act the way I thought they should act. Children needed more freedom than I could provide them.

  I don’t believe I ever felt compelled to share any of my toys, my ideas or anything else that was mine. If I did decide to play with a friend other than my imaginary ones, it was typically with a little girl named Maureen (who is still my best friend). Even now, Maureen teases me with stories that involve her scheming to hide her other playmates when I came to visit her at her home. It seems I became very hostile if I were to discover she had betrayed me by inviting someone else to play. For my part, I vividly remember hating to see her with anyone other than me. I don’t believe I was jealous. I know it wasn’t simple insecurities. I didn’t give other children enough thought to warrant those emotions. I simply could not see the point in having more than one friend and I could never imagine Maureen might feel any differently. To me, the logic was simple. I had my friend. She had me. End of story. Anyone else was an obvious intrusion, an intrusion that, if allowed, would force me into a very uncomfortable and generally impossible situation. If another little child were allowed in our circle, I would then be expected to play with that child, too.

  I never understood group dynamics, particularly casual friendship dynamics that work on giving and taking, role playing and modeling, rule following and turn taking. Somewhere along the way, I had learned to cope with the intricacies of young friendships well enough to manage one friend. Any more spelled disaster sometimes in very real forms. One day, I suppose I had had enough of Maureen’s having other friends. She and a little girl from next door were playing outside in the yard when I marched myself up to the little girl and asked her just why she was at Maureen’s house. I can’t remember what she told me, but I do remember I punched her right in the belly the moment she finished her explanation. I guess she said something I didn’t like!

  My mother enrolled me in a ballet class when I was six years old to help me with my inability to enjoy my peers. While this seemed a good plan, it was very short lived. To begin with, I disliked ballet in general. I could not for the life of me master the intricateness of it all; the coordinat
ion of bilateral movement it requires. My mind was simply unable to prepare a way for my body to understand first position or second position or any position that meant one leg had to go one way and the other another while my arms went still a different direction. Ballet frustrated and confused me. What did it mean to move like a swan? Would a swan wear leotards that strangled or slippers that made your toes go to sleep? Ballet and my teacher made no sense. At least none I could fathom. The children made no sense either. They refused to follow the rules. Sooner than later, ballet had worn out its welcome with me, and I with it. I often wonder if my teacher was delighted or dismayed to make the call that led to my never returning to class.

  «Mrs. Holliday, we think it would be in everyone’s best interest if Liane no longer attended our school», the teacher began.

  «Why would you suggest that?» my mother responded.

  «To begin with, she is quite uncoordinated. But her worst offence is her attitude. Not only is she uncooperative, she also refuses to get along with others. In fact, she hits the poor children whose only failing is standing near her».

  When my mother asked me why I hit the poor children in my class, I gave an answer that to me, was self-explanatory.

  «Because they touched me».

  «What do you mean „because they touched you“?» Mom asked. «We’re supposed to stay an arm away from each other. We are not supposed to touch».

  «But Liane, they don’t mean to touch you. They probably just lose their balance and accidentally run into you».

  «They aren’t supposed to touch me», was the only reply I would give. Made sense to me. And so ended my ballet career.

  Words were beginning to mean far more to me than actions were. I remember following directions, literally and to the letter. As was her habit, Mom insisted I be able to see the roof of my house from wherever I was. This was her way of insuring I never wandered off too far. One afternoon, I remember making my way to my elementary school playground, never fearing that four blocks was too far away. After all, I told my mother when I returned home and found her terribly upset, I had been able to see the roof of my home. So what if I had had to climb to the roof of my school to do so. That’s how I understood language. Words had yet to develop into metaphors or similes or analogies or main ideas. It was all about details and pedantic rules and one-way semantics. I never considered a statement had more than one meaning. I always assumed the meaning I inferred was the intent of the speaker. Today, we know we need to help children with AS learn that other people have other points of views. Back when I was young, we simply assumed children were innately equipped with this knowledge. My parents, assuming I was acting audaciously, were constantly baffled as to why I found it so necessary to challenge their authority. They found themselves weighing their every directive to be certain I would not find a way to weave their words with mine. Which is of course, exactly what I did. I had to make their language fit into mine. I was not able to make mine fit into theirs.