I never really knew my sister Ann until after she passed away at age 66.
The flowers and funeral came and went. During the purging of her house, I discovered piles of papers, notebooks, and even fully developed manuscripts that I never knew existed. The pages overflowed with lengthy and well-developed outpourings, unanswered questions, intense longings, and subtle but meaningful victories.
Ann was eleven years older than I, and always defied my understanding. I loved her and knew she loved me. But she was always just a bit different – a bit odd - in ways that couldn’t easily be evaluated.
It seemed Ann could not make sense of life except from her own perspective. She clung tenaciously to her perceptions as unconditionally accurate and true. A preoccupation with allergies controlled her thoughts and actions – indeed, her entire life. Lady, her black laborador and one-and-only trusted confident, received lavish doses of the affection and physical touch she seemed unable to share with others. At times she laughed uproariously at things I didn’t think were even remotely funny, throwing back her head and flailing her hands to accompany loud screeches and guffaws. At other times she sat mute and stone-faced with her arms crossed closely against her chest and one foot tucked at an odd angle, as if conspicuously out of place.
Although higher education required massive doses of self-discipline, Ann achieved a bachelor’s degree and later a master’s degree in education. During those years our mother coached her to listen well, work hard, sit in the front row of each class, and never give up. Still, after earning those degrees Ann was unemployable. She was fired several times for seemingly unidentifiable gaps in social etiquette and retreated to live out her years with our parents.
There was a strange sort of strange brilliance about Ann, as if her elephant memory held gems of knowledge that never quite found a place to land. Only after absorbing the deep heart-talk of Ann’s written legacy did I converse with a psychologist in an attempt to find answers to explain this discrepancy. During a short exchange of questions and answers she looked me in the eye and said, “It sounds to me like your sister was one of those who dealt with undiagnosed Asperger’s Syndrome all her life.”
A posthumous diagnosis? How reliable could that be? And yet it didn’t matter. I had a job to do.
For years Ann had talked in vague terms about “writing a book” – and yet at the time I had no idea she was so serious. After her death, it became apparent that I would be the one to write the book – to compile her written work in a way that would touch the hearts and minds of families dealing with higher levels of autism. Her manuscripts and journals were well orchestrated, detailed, and heart-felt - but always lacked a concise ending or conclusion. That’s because, as she once said, “the last chapter was never written.” Her diagnosis, which would explain everything, remained obscured until after her passing.
The remainder of this article includes excerpts from Ann’s writings. I feel they disclose Ann’s experience of Asperger’s Syndrome from the inside-out, and clarify her foundational need: love and acceptance. These clips are just the tip of the iceberg – a foretaste of the book that is yet to come.
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Center stage – I must have center stage. It may look as if I am selfish or spoiled, but if don’t keep myself in center stage I think I would get lost not IN the crowd, but BEHIND the crowd. Then I would never catch up.
The “maze” feeling is and has been a continual problem. It comes and goes, sometimes with floating anxiety. I sometimes feel like the little laboratory rat running nowhere, back and forth in the lab maze. Maybe I am as frightened and confused as the rat, too.
That’s probably why I have this repetitive dream when I am being chased and am terrified because my legs run in place but carry me nowhere. If however, another person runs too, and allows me either to touch a piece of their clothing or their hand or arm, together we leave the pursuer far behind.
I can’t expose myself to myself until another person accepts the defect. I can’t accept my own emotion unless I’m alone (maybe not then) or with someone else who accepts it.
Sidestepping is the most blatant non-recognition. It is actually refusal to acknowledge reality. People see me with A.B., M.S. after my name…and that’s all they want to see.
The really hard thing about presenting myself as a bright but impaired person is that I have to accept what is, and where the line is, where no one else will. It all comes back to self-concept, dealing with the fear of being alone and trying not to feel guilty for not “measuring up.”
I have felt an absence of respect from others and therefore no self-respect. If the way I do things is wrong, then I must be wrong, too. I still feel as though I am the trigger for the reactions of other people – that what I do or don’t do is the sole factor in the relationship. When I become embarrassed I can’t tell the difference between articulate and unnecessary because guilt comes flowing in like a river to color the whole situation.
What of those of us who are in the middle? If I were severely retarded I could run or swim in the Special Olympics. If I were “normal” I could run or swim in the regular Olympics. Guilt, guilt, guilt for not being what I ought to be.
How can I love anyone if I feel I am a “bother” or that people “humor” me? In seventy percent of the people situations I get into I am inwardly wringing my hands. I don’t know how to react because I am a “bother.” I feel they could get along better without me.
Everything seems like a judgment to me, even when intellectually I know it is not. The degree of the reaction depends who the encounter is with and what the exchange is. I guess things would seem like a judgment to anyone if most of your life people let you know they thought you were doing everything the wrong way or that the way you do it doesn’t measure up to some fixed standard.
It is very apparent that I can’t use someone else’s structure for a situation. I must make up my own – or perhaps borrow from someone else’s foundation if I am not threatened by it.
Slow isn’t dumb. Funny thing…slow isn’t humiliated either, just on guard against inconveniencing others.
Balance for me, out of necessity, is different than for others. I am constantly on the search for new reference points. My problem is to find out where mine separate from others. Then I can handle myself.
It’s not a matter of “I was” or “I will be” but “I am.” It’s being – present tense, dealing with now. Now is bewildering, frightening, puzzling, but also comforting. It is comforting to know what is real and what isn’t; to base reaction on fact rather than supposition.
I see defeat as a launch pad from which you can disintegrate into total failure, never to try again, or else mobilize learned lessons and use them as a stepping-stone to success.
Life is but a mist, a vapor that hovers over earth for a period, subject to the Creator’s judgment. It can vanish or reappear at His call. How quickly it can dissipate into nothing – how quickly it can become something.
Each person’s goals are his own. Mine are higher than others’ and yet my limitations are greater. To be gifted and defective – damaged, limited, handicapped – presents almost a greater problem than being average.
I lose my thought in conversation if the primary thought is interrupted by a secondary thought or by an outsider. If other people do this, I do it three or four times as often. Interesting how sometimes my own thought processes interrupt my own thought processes….
When I fall into the crevasses of my mind, it is my responsibility to climb out. But much of the time I can’t until someone else comes along, takes an axe, and notches the steps for me.
It is a traumatic experience to change, to move from one context to another. To redefine abilities is one thing; to redefine my inner self, which is the basis for external relationship, is another. And yet, this is the substance of inner healing.
I must mobilize my will to trust, not only on the spiritual level, but the human level as well. Maybe that is the responsibility above all. To be able to dismantle self in front of another person and then put self back together in a different way involves a raw kind of trust. It is bearable because the rebuilt self will be much better than the one that was dismantled.
If love is ever ready to believe the best of every person, it also allows the person the privilege and duty of defining and attaining his own best. I get so tired of “you shoulds” and “you oughts” that I could scream.
How nice it would have been if, before the scar tissue formed over my ability to touch and be touched affectionately, someone would have given me constructive rest periods from tasks that were TOO BIG; if someone had put me upon a knee or lap with arms enfolded around me, murmured nice words that the best was there and would come – if that had happened, there would have been fewer emotional hangovers. Although I am having exhausting wresting matches with the past and they have threatened to pin me to emotional hangovers, I have awakened to an even more gentle current within – flowing deeper than ever before.
I have been so bound these many years by the ambiguity of being different. This translated into a feeling of “subnormality.”
How many times have I sat beside another person, loving him/her deeply, feeling the warmth being radiated toward me, yet being choked by an inner bleeding which threw me into a desperate state – like that of a drowning person? Originally I thought the fear threatening to destroy me came from the other who was with me, but now I know it as fear of my own “leprosy.”
As my “leprous” sores seep less and less, the neurotic bandages I have made for myself seem less necessary. One day not long from now those bandages will all be put in the incinerator and burned to ashes and dust because…a Greater Love… is filtering through my deepest fissures.
Can someone believe that the best in me is there, can come out, is coming out? That there have never been oughts and shoulds, just definitions and encouragements?
One person is all it takes.
If you died today, are you absolutely certain that you would go to heaven? You can be! TRUST JESUS NOW
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Hello again! Wow, I sit here, after reading Ann's words, in a state of "pause and absorb" ~~ Such deep sharing ... deep calling out to deep, and I want to see into her space and meet her; give her my friendship, as she nods and smiles from Paradise.
Such a love and dedication you have for your sister, and this calling, (oh yes, from God) to write and share with us.
I am listening, friend, and thank you. I can apply what I have just read to others, myself, no matter what path one is on, as there are these "nuggets" of gold you are revealing; she is revealing.
Love in Christ,