Looking back, I should have realized my seven year old daughter had a developmental disorder long before I actually did. I recognized her early delays, the frustrations she had, the obsessive behaviors, the sensory integration problems, the resistance to change and the rush to rage. Somehow, I misread those behaviors. Not so much because I loved my daughter too much to see her inabilities, but rather, because I so related to her world. Simply put, she did just as I did, albeit on a toddler's schedule and course. She had my temperament, my determination, even my mannerisms, my likes and my dislikes. Yet despite our shared perception of the world, I should have known my daughter needed professional help, because I needed it too. I always knew I was odd, weird, prone to reclusiveness and eccentric behavior. I knew too that my life was one filled with uncertainty, confusion and cloudy consciousness; a surreal walk through life that typically included a lot of disappointment, despair, insecurities and self-esteem problems. I suppose I never wanted to admit my daughter would face my reality. I believe I thought that if I held her close and kept her safe, no one would ever know she suffered the same problems as her mother did. Sometimes I wonder if I didn't relish the fact that my daughter was so much like me, for it gave me someone to share my skewed world with. Through her, I had a confidant and a knowing friend, someone who would understand me, perhaps for the first time in my life. Yet, all along, I think I knew things would someday pull beyond my control. I had to know others would begin to notice her differences, just as I knew they noticed mind. Seven long years after she was born, I finally came to the knowledge that I had to help my daughter get help and get well. I feared that if I didn't, she would join me in what I thought had become a world running just footsteps ahead of mental illness. I didn't know then what I know now.

Thank the heavens, I met a friend who's son has Asperger's Syndrome. Thanks to her, I began to learn more about this autistic shadow syndrome. I became obsessed with learning everything I could, gobbling up research papers and textbooks with more fervor than I had unleashed on my doctoral studies and within weeks, I knew my daughter and I, not to mention our entire family was about to turn a corner. I knew something was on the horizon that promised great hope and promise. I was right. Within a few months my daughter received a formal diagnosis of Asperger's Syndrome, and as I watched her taking her tests, as I heard her give the same replies I would have given, I knew without having to be told that I too, suffer from the same disorder. But it is a disorder I welcome with open arms for in my mind it is no disorder at all, but rather a difference, a uniqueness. I can't articulate the relief I felt when I finally realized, without doubt, that my daughter and I were not suffering from a mental illness or a split personality or any such thing. We have Asperger's. We can live with that! We can grow and succeed and reach goals and dreams and continue through life with optimism and hope.

Now that I know about Asperger's Syndrome, I feel free. I feel I have been given license to express myself as I am, not an obligation to try and become what others in the 'normal' population would have me be. What a relief to no longer worry I'm suffering from a true mental disturbance, one that might someday send me to a world of darkness and fear. What a thrill to find I only see things, perceive things, and receive things differently from others, and that this is okay. It is, my normal. And now I know it is my daughter's normal. Now I know we can ask you, 'What did you mean by that', and not feel stupid for having done so. We can explain to you, when we interrupt your conversations or when we blurt out something seemingly rude and inappropriate, that we didn't really mean to be either of the two. We can raise our head high and simply say to anyone who cares, 'Sorry, but this noise/bright light/crowd/mix of sensory images... is too much to handle I'm outa here!' and we don't have to feel weird, or odd or socially inept at all. We might even point out that we have Asperger's Disorder, or then again, we might not. But, whatever we do, we will no longer feel ashamed of who we are, we will never hate ourselves for not fitting in like everyone else does, and we will never convince ourselves that we have to follow anyone else's path. And for those who know and love us, a new book has unfolded that tells the story of a mother and daughter and perhaps even a grandparent or cousin or two, who share a special world that has plenty of room in it for all those who care enough to visit and hopefully stay awhile, perhaps even forever. Similarly, I am confident my other children and my husband and any family members or friends who know and love us, will gently hold our hand as we try to cross into their world, for they will be armed with information we did not have a generation ago, the information that Asperger's Syndrome is not something to be frightened of, confused by or disgusted with--- it is simply, for us anyway, a different way of life, one as rich and rewarding as anyone else's, that is in our own special way.

This material may not be copied without the express written permission of the author

Click here to send comments or request permission to copy



The O.A.S.I.S. (Online Asperger Syndrome Information and Support Web Page
and all O.A.S.I.S. links and formatting
(http://www.udel.edu/bkirby/asperger/) are © by Barbara L. Kirby
For permission to reprint, please contact bkirby@udel.edu

Home to O.A.S.I.S.