Tag Archives: Aspergers Syndrome

What My Mother Taught Her Daughters about Sisterhood and Family

My sister Anne and I were not close growing up. Anne was the oldest. I was a duplicate. She and I were jealous of each other. There was so little parental engagement, and we four kids were like hawks, always hunting for a scrap to eat and squawking if another bird got it.

From my perspective, Anne got all the attention from Mother, and I had to work to find ways to gain Mother’s notice, to feel the warmth I longed for and was sure emanated from her if I could just figure out how to turn it my way. Like most kids, we projected our expectations onto an image of our mother. Neither of us had any idea that Mother’s miniature supply of devotion and nurturing was not the same as most other mothers are filled with. Anne’s view was that I was elbowing her aside, a crafty thief acting with a competitive motive of getting attention away from her, and she resented it.

Our mother had only enough nurture and protection for one, herself, and there were four of us kids.

By high school, Anne and I were very different and had no friends in common. She was quiet and an excellent student and never any trouble to our parents. On the other hand, I found a substitute family in a group of kids who were from families as broken as my own. We were outliers, the high school hippies.

As a teenager, I was home as little as possible, and my parents didn’t seem to care or wonder where I was. I generally stayed out all weekend, and no one said a word. Looking back, I’m a little surprised I lived through it. I put myself into dangerous situations and sometimes didn’t care what happened to me. I was needy and lost; I latched onto one sad boyfriend after another, but no amount of love or obsession could fill the hole in my heart.

I took long walks. I wrote poetry. I listened to music and spent long periods of time alone trying to figure out what was wrong with me. I thought I was building a self when I was at least as much self-destructing. My parents had little comment beyond one conversation in which my father told me he could trust Anne to take care of herself but he didn’t have any faith in me. I was trouble, and their hands-off, not-my-problem strategy for dealing with troublesome kids was the same one they used for compliant ones.

When Anne left for college, I hardly noticed. She came home as infrequently as possible. I don’t think I ever wrote to or received a letter from her. We were both undernourished and ill-confident and self-absorbed, and we had never been shown that family mattered.

After I moved to Texas when I was 18, Anne and I never even temporarily lived in the same town again. We didn’t talk often and didn’t see each other more than once every year or two until Mother moved to Atlanta when we were both in our thirties. We were pleasant to each other, but that was all.

Our relationship changed only when Anne let go of her hopeful assumptions about our mother and began to realize that she did not fall within the range of normal, loving mothers like Anne had always assumed she was. Anne began to recognize that she had misplaced the responsibility when she blamed me for trying so hard to get Mother’s attention. Anne and I started talking more often and having more substantial discussions.

I learned a lot from Anne in these conversations. Her two sons are about eight years older than my two, and when we started talking, her sons were young teenagers. One of Anne’s revelations was that she couldn’t understand why Mother had virtually abdicated her role when we were young teenagers. At the time we didn’t have a way to know better about how good parents operate. But now that Anne had teenagers, she couldn’t reconcile Mother’s past apathy and inaction towards the four of us with her own continued involvement in her children’s lives.

As Anne realized, teenagers still need lots of support and guidance and oversight. They aren’t fully formed. They’re all insecure and uncertain. They can’t raise themselves.  They need parental involvement. Why, Anne wanted to know, did Mother not instinctively want to function as a loving and protective mother? Why wasn’t she wired to nurture and to view us as lovable charges who needed her guidance and interference and understanding, even when our ages reached double digits, even if protecting us was stressful or demanded some self-sacrifice? As Anne and I talked, we had to admit that she was not that much more involved when we were younger.

Anne and I are close now. We talk often, though all too frequently it is about our frustration with Mother’s oblivious self-absorption: her latest unreasonable demand or fear or another instance of her expecting us to act as her problem-solving marionettes or the most recent example of her lack of interest and love for her family. Our closeness, our sisterhood, was late coming, but I am grateful to have that relationship now.

Anne has pointed out that our parents never showed us that family was important. She thinks it’s not a coincidence that the four of us kids have ended up in distant cities, many hundreds of miles from each other. One year at the beach when my older son was seven, Anne took him along to a minor league baseball game with her family. I stayed back at the house with my younger son, but I really appreciate that she wanted to bring my son along with hers. We haven’t had much opportunity to blend our families, and she has taken the lead on this. She has thought of ways to create the family we never had growing up. In fact, the family beach trip was her idea, and she took on the annual challenge of wrestling with Mother to persuade her to continue to fund it.

I am not suggesting that my mother wanted to keep her children apart. In fact, she believed we would be the close companions she’d read siblings would be. But she had no sense that her actions might play a role in our relationships or in the development of our sense of self. She just could not grasp that kids need attention and understanding and that motherhood includes self-sacrifice that the mother does not resent giving. Trapped in the black hole of her stresses and needs and fears, she had no way of knowing that it’s hard for kids to be close when they are perpetually hungry for maternal love and attention and protection.

It’s not her fault that she is oblivious to even her children’s needs. She has no foundation for empathy; she just isn’t built to support it. I know that, though it is so hard to face.

Copyright 2016. All rights reserved.


The Memory Vault

Like many people who have Aspergers Syndrome, my mother has a phenomenal memory. She remembers events and conversations and feelings and smells from an astonishingly early age. Though research indicates that most people don’t retain memories of the years before age five, my mother does. And her memories aren’t just vague images. She can roll the film and replay complete scenes, including what she was wearing, the weather, and often the exact date.

Her first memories are from when she was not yet two years old. She had an imaginary friend named Dorothy who existed in a mirror in the small house the family lived in until she was one and a half, when they moved to the large house where she spent the rest of her youth. She is sure about her age in the memory because of the house she was in; it had to be from before the move in 1932 to her grandparents’ house.

My mother’s interaction with imaginary Dorothy was limited to a single daily routine. She would stand in front of the hall mirror and tell Dorothy what color dress she was wearing that day. My mother remembers her mother smiling as she watched this daily ritual, and she remembers being pleased that her mother was amused. Make-believe Dorothy had no other role beyond receiving the day’s report on my mother’s dress color, and she did not move to the new house.

My mother wrote me an email with this account of her grandfather Henry’s last days in February, 1934, when she was 3¼ years old.

“My grandfather died on February 13. He had pneumonia and was sick only a few days. My mother said that she thought he had lost the will to live after the bank failure, which had cast a huge shadow on an otherwise pleasant life.

“[I remember that] a nurse was hired to come into the home to take care of him. What I see is that I am sitting at the breakfast table in the kitchen with my mother and grandmother on their feet in the room. The nurse comes in. She is a middle-aged woman, probably in her fifties, dark brown hair in a typical permanent fashion of the time, wears glasses, is wearing the traditional white uniform and cap. She has a very definite manner typical of nurses of that time, although in this instance she is not able to remember what her patient takes in his coffee. She must have been there several days at the time. After she left the room Grandma Amanda says, “Why can’t she ever remember that?”

“This sort of thing always amazed my mother when I would speak of it several years later, and it would be something that really had happened.”

My mother remembers a dream she had the night her brother was born when she was 6½. In her dream that night, my mother recalls that “I was in a courtyard of buildings that looked something like a picture that used to hang over the desk in the hall, a black and white etching. I was chasing a black and white cat around the courtyard. I had a wicker basket like Mother’s sewing basket and I wanted to catch the cat in it. I was having no luck when I woke up and heard Dad in the middle bedroom. The door between the bedrooms opened then and I went in. His first words were, ‘You have a little brother.’ I thought, ‘How interesting.’”

My mother can remember scenes from nearly every day of most of her early life, as though each has been filmed, indexed and stored for easy retrieval. This extraordinary ability is one of her few old-age interests. She is content to sit alone and replay her memory tapes. She’s delighted to narrate one if you ask.

“I’ve been told many times about my memory being unusually sharp, but to me it just seems ‘normal.’ I’ve always been accustomed to remembering a lot of what has happened in my life and am always surprised that many other people don’t remember such things! I don’t remember every day of my life, although when I was a teen-ager I thought that I could remember every day of my grade school years. It seemed to me that I remembered every day of kindergarten for a long time as it made such an impression on me as being a new way of life. Now I only remember parts of those days.

“I do remember Monday March 23, 1936 [she was 5 and in kindergarten]. It was one of those unusual balmy March spring days in Davenport after a particularly severe winter. I remember being out on the playground at recess and taking in the scene – everyone wearing lighter outdoor wear, balmy breezes.

“I don’t know how typical this is, but often I remember something that somebody said in my presence during my growing up years and it is so real to me that it is though they made the statement no longer ago than last week. Then I think to myself that it has to have been 60 or 70 years or even more since they said it.”

c 2015 Sarah Meyer Noel

A Unique Awareness of Entropy

Solving my mother’s problems and calming her fears is only one aspect of being her child. We also are expected to want nothing from her, especially emotional support if it requires more than an expression of helpless sympathy. She feels compassion at times, but doesn’t connect this feeling to any action she might take on someone else’s behalf. She wants updates on a spouse’s or grandson’s condition if they have a medical problem – and she insists on acting as the hub of information to the rest of us, becoming annoyed if we have already been informed of things she wants to be the one to tell (in fact, she always seems surprised to hear that her children have relationships with each other, as if we live in suspended animation until she needs us and are tethered only to her). But she never offers to help. We know – we have always known – that we are on our own.

I wish I understood the workings of her brain better than I do. It occurs to me that perhaps the autism spectrum is about a constant and acute recognition of entropy, a threat state that the rest of us are wired to ignore. Perhaps people with this condition are emotional survivalists so hyper-aware of the relentless degeneration of the world that they react by excessively building bunkers against chaos and repairing what they understand to be the critical base order for their next breath.

Conducted under such intense pressure that the person is unable to economically borrow from conventional wisdom, or detect similarities in ambiguous information and generalize, or take conscious charge of their thought processes, this reactionary behavior consumes so much attention and energy and emotion that the person has no available capacity for understanding other people or balancing their own needs and those of anyone else. They are so occupied that there is no energy left for developing relationships or offering emotional reciprocity, which seem superfluous when it’s you against the crumbling world. How can you notice anyone outside this perpetual crisis of self?

Copyright 2015 Sarah Meyer Noel. All rights reserved.

A Universe of One

When my mother was a young child, she made up a rule to guide her consumption of ice cream, which was a favorite treat. Her ice cream rule was that on even-numbered days she could have ice cream only served on a cone; odd-numbered days were strictly ice-cream-in-a-dish days. One summer Saturday a family friend offered to buy her an ice cream cone at a stand in the park. Mother was heartsick at being forced to turn it down. It was an odd-numbered day. A dish day. And to my mother, one of her private rules must trump even the joy of a spontaneous ice cream cone.

Mother reluctantly let go of the ice cream rule soon after that day in the park; she had not anticipated that a rule meant to relieve the stress of choosing could ever cause self-sacrifice. This one failure did not cool her ardor for creating new commandments, however. She has always relied on an inviolate and broad-ranging charter of unique rules to manage the unpredictable world and diminish the pressures of problem-solving.

Although the ice cream rule was retired, my mother maintains a full catalog of unassailable food dictates, such as her statute for hard-boiling eggs. According to Mother Rules, eggs must be boiled for an hour to avoid the digestive peril of an undercooked egg. This degree of overcooking produces, well, a super firm (let’s call it “chewy”) egg white and a dry, perfectly intact yolk with a rich khaki-green coating.

Until we were old enough to read cookbooks and my sister Anne discovered that eggs shouldn’t be boiled for more than ten minutes, I believed that the green layer on the yolk was how hard-boiled eggs were naturally supposed to look.

When Anne informed Mother that she was boiling eggs at least six times longer than necessary, Mother refused to incorporate this information. No matter how often we reminded her of the printed facts, she was steadfastly hostile to all efforts to change her method or to look at the cookbook instructions on egg boiling. Instead, to protect herself and her rule from jeopardy, she ignored everyone else and continued to boil eggs for a solid hour.

Rules vs. Facts

Many of Mother’s rules revolve around managing her myriad fears and calming her abundant stress. Even when her children present evidence that a particular fear is completely baseless, she can’t let go of the fear or modify the related rule – because other people’s facts don’t dispel fear; only her carefully constructed rules have the power to fend off a threat. Our facts are just more noise.

The first time we present data that undercuts one of her rules, our mother laughs nervously and dismisses our comments. If we point out a second time the dissonance between any of her rules and reality, she is disconcerted and defensive. Should we heedlessly repeat the facts that undermine her rule a third time, she is likely to get angry. Rules cannot change without destabilizing her universe of one.

Eventually we learned not to try to change her rules or put too much emphasis on countervailing facts. And throughout our childhoods, in the interest of maintaining faith in her, we continuously lowered our assumptions of what we could expect from her.

Copyright 2014 Sarah Meyer Noel. All rights reserved.

Romancing Norb

My pre-teenaged mother was enraptured by the idea of romance and at twelve documented her vision of married life and motherhood. Aspergers may have limited her ability to connect with other people, but it did not dampen her desire for love and marriage. She had two romances in her life, both with men who shared her lack of empathy.

My father was my mother’s first boyfriend and the only man in her life until her widowhood romance with my father’s friend Norb, an even drunker drunk than my father but a drunk who was still adaptive enough to flatter my mother and to pretend to enjoy her quirky interests – something my father had always refused to do. Norb, by then thrice-divorced and essentially homeless, was just manipulating her, of course, but she gulped it down like a woman who’d miraculously found a lush oasis after an exhausting trek in an endless desert and was not inclined to wonder how it materialized and whether it could last.

It didn’t last. Norb was so dedicated to drunkenness that he eventually left to get away from my tee-totaling mother’s efforts to subvert his only genuine interest.

As much as Mother could not see through Norb, she did know enough not to marry him. Though she thought they were soul mates, she knew he would not take care of her. She had already witnessed his callow treatment of wife number two and had cheerfully attended wedding number three a year or two later to her sad-sack friend Billie, a mother of four boys who somehow convinced herself that jobless drunk Norb was some kind of better role model than their absent father. Mother reported casually about the rapid dissolution of that month-long third marriage under the strain of Norb’s dedication to a 24/7 drinking schedule. She was little affected when, a few years after their affair, Norb finally drank himself to death in some dismal dive downtown.

Mother reminisced dreamily about Norb for years, though, never acknowledging his inappropriate behavior towards me when I visited, never disapproving of his inexplicable nastiness to my brother and never noticing that he did not have redeeming qualities to even partially offset his drunkenness and his Machiavellian behavior. She ignored my indifference to gushy stories about Norb reading her favorite children’s books aloud or gaily reminiscing about the music and movies of their youth. She did not drop the romantic cover or glance over at the memory tapes of his cruelty or his deceit or the detritus of his three marriages and his three overlooked children. He had filled a need, even if it was all a fraud.

When my sister and I cleaned out Mother’s condo recently when she moved to assisted living, I discovered a miniature trove of Norb memorabilia, including his high school diploma and a jumble of check stubs from some time in the 80s, the last time Norb was sober and solvent enough to have had a checking account. These keepsakes were tossed in a large metal box marked without irony for the convenience of burglars who never came, “Mementos. Nothing of value.”

Copyright 2014 Sarah Meyer Noel. All rights reserved.

The Tomato Aspic Incident

In spite of her inattention to many other parts of our lives, my rule-loving mother was a staunch practitioner of the eat-every-bite-on-your-plate school, which was complicated by her inept cooking and some child-unfriendly food selections. Her view was that if she liked something, her children had damned well better eat every bite of it.

Typical dinners included La Choi Chop Suey (if you’ve never been subjected to this canned mockery of Chinese food, consider yourself very fortunate) and Sloppy Joes (her three-ingredient version: undrained ground beef mixed with ketchup and brown sugar) and her three-season Saturday night special for the kids: a casserole dish of canned store-brand pork’n’beans topped with a single thin fried pork chop for the four children to share. Every single time she boiled potatoes, she boiled them dry, so we were pretty used to the burnt bouquet of her mashed potatoes. Since she did not believe in draining anything or purchasing lean meat, beef dishes were a pretty greasy and crumbly affair. I cannot bear to recall her meatloaf.

We were also expected to quietly eat what we unanimously agreed were our two least-favorite foods: boiled rutabaga and, on the most dreaded occasions, tomato aspic. Don’t know what tomato aspic is? Count your blessings. At its heart is it tomato juice in an unnatural union with unflavored gelatin and crab. Mother made it with watered-down tomato soup instead of juice and added undrained tuna in lieu of crabmeat, producing a taste and texture the memory of which makes me shudder even decades later. If there is a devil, he invented this gelatinous abomination as part of his scheme to erode family harmony, and then he put the recipe in the hands of the material world’s worst cooks, a category that I believe includes my mother.

I don’t know why my mother, who loves to eat, didn’t notice how awful her cooking was or try to improve it, but she knew to withhold certain especially sketchy concoctions until my father was out of town on business. One such night was when I was eight, and the menu featured the dreaded tomato aspic as main course.

After dinner, as Anne and I cleared the table, my six-year-old brother Jim went to empty the kitchen trash. There, with the fervor of a junior detective, he discovered a napkin full of surreptitiously discarded tomato aspic and, indignant that one of his siblings had evaded the horror he had just choked down, he triumphantly alerted my mother.

This discovery catapulted my mother into apoplexy. She was so insanely furious, so hysterically enraged, that we were all terrified. Jim, the only one who escaped suspicion, soon regretted telling her about this crime against chilled molded salads and mothers with unbreakable rules. The irrational shrieking, the disproportionate threatening, the bitter wrath ensured that the guilty party, who I admit was, well, me, was too afraid to come clean.

After she stormed to her room to lie down, screaming out a livid ultimatum for a confession, I admitted to my siblings what I had done. The four of us worked out a plan – the only way we thought this could end without the beating of a lifetime (she was an enthusiastic all-occasion spanker). With his too-youthful consent, we agreed that we would tell Mother that the youngest, four-year-old Dan, was the guilty party. She would go light on him since he was the baby and she typically exempted him from her sternest rules. He did get spanked, but she was much calmer once she believed that the older kids were not defying her. I still feel guilty about this. I mean about hurling Dan under the bus to protect myself, not about throwing out the goddamn tomato aspic.   

Maybe there was something already troubling my mother that day, and the aspic-disposal deception was a last straw. But as a mother myself, I just don’t understand her catatonic reaction. Even under the stress of my marriage ending when my sons were pre-schoolers and I had a demanding full-time job, I have never come near to freaking out at my children like that over anything.

Mother took the Aspic Incident so personally, as though some sacred boundary had been breached. The extent of her shock and fury make sense to me only as an expression of her conviction that her children would always fit into her rules about what we would be. This unbearable action must mean that the world had suddenly scrambled into terrifying incomprehensibility and, as it crumbled at its very roots, threatened her sense of self.

Copyright 2014 Sarah Meyer Noel. All rights reserved.

The Safe Side: Managing the Fear-based Life

My mother has created iron-clad rules to fend off her fears. While we her children are familiar with many of these fears and their ameliorating rules, there are probably more that she keeps secret. For example, we didn’t know until she was in her sixties that she had fear-inspired rules against elevators and escalators. She managed to avoid taking us anywhere that would force her to use either type of conveyance throughout our entire childhoods. Well, she managed to avoid taking us almost anywhere period.

The rules that we do know well include those for her notions of food safety and the essential life-preserving protection of constant refrigeration and early disposal. She loves food, but ironically food is a source of imminent danger with jackrabbit reflexes that can be controlled only through a ruthless vigilance. My mother’s food rules focus especially on the threat represented by comestibles that should be chilled but that have been recklessly left out of the refrigerator for more than a few minutes – risky but delicious items such as mayonnaise or god forbid a volatile tuna fish sandwich.

Sometimes she calls to get my confirmation on the wisdom of throwing away food, and not just food that the label commands be refrigerated after opening. Food age in general is also a life-threatening condition, and printed expiration dates are to be regarded as a provocation that teeters between an irresponsibly liberal suggestion and a bold dare.

I usually don’t think disposal is necessary no matter what challenging circumstances she presents, but she isn’t interested in my opinion. Any food she asks about is already tagged as seething with rapidly reproducing lethal bacteria and destined for the trashcan. She calls me because she needs someone to listen to her puzzle as an intermediate step between the emergence of her worry and the execution of her solution. She has never had food poisoning, but is certain this escape from peril has occurred only because of her hyper-alert security system.

Her children roll their eyes over the rules and her obsession with what she has defined as “the safe side.” There’s no point in trying to reason with her on the rules. She isn’t going to harm herself with over-boiled eggs or go hungry because she threw out perfectly good food when it has violated one of her safety rules.

Her rules never put her in danger; they keep her in an inflexible cocoon of excessive caution that limits her life experience along with calming her worries and reducing her perception of risk to herself.

Where her fear-first policy really does diminish her life is not when it revolves around suspect expiration dates or unrefrigerated mayonnaise or sinister elevators. It’s when she doesn’t travel, doesn’t meet new people, doesn’t try different things, doesn’t experiment, doesn’t open her heart. Not only has she missed so many wonderful experiences, she has robbed herself of sharing these experiences with people she should care about.

She robbed us too. I see other kids’ out-of-town grandparents at their graduations, their awards ceremonies, their plays, their big games or just at a restaurant and feel bad for her that she doesn’t want that involvement for herself or for her family. I feel bad for my kids that they don’t have that relationship with their grandmother. Surely life is more than safety, self-indulgence and fending off stress, but often that seems to be all that matters to my mother.

Copyright 2014 Sarah Meyer Noel. All rights reserved.