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.