The prognosis for those with AS is quite variable. Much depends 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.