Tag Archives: parent with ASD

The Hardest Thing

Someone asked me to name the hardest thing about having a parent on the autism spectrum. Speaking only for myself, I guess I’d say it’s the radical imbalance in needs recognition and fulfillment. Everything my mother thinks she needs is red-alert urgent until the need is fulfilled. Anything someone else needs is of no value to her – maybe even stressful for her to consider – so she ignores it. If you try to get her to acknowledge your need, she squirms away from this threatening information and gets mad if you don’t quickly drop it.

We were well-trained as children to meet her needs and not to expect much from her. That dynamic hasn’t changed. Here are two examples of what it’s like to be her child:

Last summer my sister’s husband was badly hurt in an accident. Nine months later, he still can’t put any weight on one leg. He’s had multiple surgeries and excruciatingly slow progress. My mother knows that this is difficult for my sister and her husband. But this understanding has no effect on her demands. One recent morning she knew my sister was at the doctor’s office with her husband but still called her repeatedly. When my sister didn’t answer the phone after several calls, my mother got a staff member at her assisted living facility to call on her behalf. I guess she thought my sister could be tricked into answering. So what was the emergency? She wanted a laxative. Sorry – no, she desperately needed a life-saving laxative. She couldn’t grasp why my sister wouldn’t immediately abandon her husband and rush from the doctor’s appointment to the drug store and then race over to deliver the medicine right that minute.

On my wedding day 18 years ago, my mother insisted I do her laundry. There are zero extenuating circumstances that would make this demand reasonable. She’d been in town for just 3 ½ days and was returning home the next morning. She was physically capable of doing her own laundry and had laundry machines right outside her bedroom door in her condo. I know it seems hard to believe I couldn’t refuse this demand. You’d have to know how she behaves when she thinks she needs something to understand why I gave up and did her damn laundry. I had no trouble saying no to my kids when they were toddlers, but they were not in her league of frantic and escalating persistence. She can make you feel like you are refusing to let her in the house during a blizzard while hungry wolves are biting at her ankles.

Wait. After writing this, I realize I was distracted by the regular frustration of her blindness to our needs. I should have said the hardest thing is feeling that she doesn’t love me. I am just someone who can be called on to meet her needs. When I’m not being useful, she forgets all about me. I have always known that I am her least favorite child, though she came to appreciate me when I became an adult and could be more useful. But my siblings don’t feel loved either. It’s ironic that she has the least relationship now with the child who was her favorite when he was young. He isn’t at all useful to her now, and as a teenager he was quite rebellious, so she dropped him down in favor and rarely talks to him.

I understand that she can’t love me, but not all of me can accept that. I am – I let myself be – caught in this cauldron of feeling angry that she doesn’t care about me and hanging onto the enduring need to accommodate her just in case I finally locate the one thing that will open her heart.

We’ve all read lines like this: Our mothers are the first ones to teach us the true meaning of love. I know that kind of statement is supposed to be a beautiful tribute to motherhood. But not every mother is able to provide the kind of love that nurtures a child’s soul with the conviction that they are lovable and treasured and their needs and happiness are important. I didn’t get that kind of uplifting love from my mother. She couldn’t teach me that meaning of love. And that’s the hardest thing.

 

Copyright 2017 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.

Turning Back

My mother had a wonderful childhood, but her close relationship with her mother turned bitter once Mother was an adult. The cause of this change was that my grandmother disagreed with some of my mother’s choices, and my mother does not tolerate anything she views as criticism. I have never heard my mother say one good thing about her mother.

After my grandparents retired to Florida, Mother visited them only twice. The first time was for her beloved father’s memorial service. The second trip occurred a few years after he died, when she went down to attend her mother’s second wedding.

She did almost go while her father was still alive. He was hospitalized with irreparable heart problems and wouldn’t survive the year. Since he was dying, Mother, who was living in St Louis and not yet a widow, decided to have my brother Dan drive her to Florida. Dan, her chauffeur, was on spring break from community college. They took a camper that my father had bought to tow his race car and sleep in on race trips.

Dan drove the whole way; Mother lounged in the back of the camper and expected Dan to stop every hour and a half for snacks and bathroom visits. The camper was selected as the mode of transportation not just for my Mother’s riding comfort, but also because she expected Dan to sleep in it during the stay in Florida since my grandmother’s condo had only two bedrooms. Mother never considered sleeping in one of the two single beds in her mother’s room so Dan didn’t have to sleep in the camper. She never considered flying to Florida so Dan didn’t have to spend his vacation driving her.

After driving for ten hours, they arrived in Atlanta to spend the night at my paternal grandmother’s house. After dinner, Mother called her mother, and they had a bitter argument on the phone. I don’t know how the dispute started, but the breaking point was that our grandmother complained that Mother hadn’t visited until her father was dying and suggested that she was coming now only out of guilt. Whatever the specifics, my grandmother had clearly breached her daughter’s no-criticism-will-be-tolerated threshold.

My mother was so furious that she insisted on going back home immediately. Her shocked mother-in-law tried to talk her into reconsidering, but Mother was adamant. She did reluctantly agree to wait until morning so Dan could get some sleep. Attempts were made to change her mind again in the morning, but Mother wouldn’t consider this, so they left right after breakfast. Mother never acknowledged that she had Dan drive her ten hours each way for nothing. Although I have never heard her discuss this trip or mention regret about it, she never saw her father again.

Copyright 2014 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.

The Other Side of a Tuna Sandwich

One especially hot July morning in 1980, the day twelve people in St Louis died from the effects of a prolonged heat wave, my 49-year-old father took the day off from work. He was still recovering from a heart attack the summer before, which meant he had added some exercise to his self-prescribed regimen of heavy drinking. While it was still early in the day, before the worst of the heat settled in, he went for a long therapeutic walk and got caught in a fierce and sudden downpour. Instead of finding cover or shrugging off the pelt of giant raindrops, my father ran all the way home. He arrived at the carport just as my brother Dan, the only child still living at home, ran out to the driveway to jump in his car and take off for work. Exposed in the storm, they didn’t stop to speak.

After my father burst into the house, drenched and panting, he ran upstairs to change his clothes, leaving the dripping outfit hanging in the shower, marking his trail with wet footprints. My mother had stayed in bed because she hadn’t slept well the night before. When she got up around 11:00, she went down to make a tuna fish sandwich for lunch, noticing that the stairs were wet. She walked towards the den, where my father always sat alone when he was home, to see if he wanted a sandwich.

She knew as soon as she saw him that he was dead.

She called an ambulance and her minister, who was about to see my church-loathing father for the first time. Then the sudden widow went back to the kitchen to empty the can of tuna into a bowl and stir in the mayonnaise. She was sitting in the dining room eating her tuna fish sandwich when the minister arrived, several minutes before the ambulance.

When the minister came in and saw her interrupted lunch on the dining room table, she realized that he might think she was wrong to be eating at that moment, what with her widowhood so fresh and her dead husband frozen against the couch on the other side of the living room. But the minister reassured her that he saw nothing wrong about the sandwich. What a relief it was to her that he was so understanding.

I’m not quite as accepting as the minister said he was, though I try to be fair in analyzing the essence of this meal. Maybe the tuna sandwich doesn’t show anything about her heart, and maybe it is wrong to question it. I struggle with how to interpret the sandwich, even now that I understand that Aspergers interferes with her feelings about other people. I brushed it off at the time she told me about the sandwich, back when I still insisted to myself that she was a typical mother. But now that I am more honest with myself about her emotional boundaries, it’s harder for me to believe that eating the sandwich is nothing more than any other way to wrestle with the horror until help arrives in a devastating crisis.

Is it too harsh to think that eating that sandwich is another sign of her shallow emotions about other people? Maybe she needed that serving of normal, of continuity and comfort to help her manage the shock of a suddenly dead husband and the specter of a startling new life. Don’t we all react in unexpected ways when we face such a shock? I want to believe in her. I still want to believe that there is a deep well of feeling for others, though she has shown over and over that there is not. But still, maybe that tuna fish sandwich doesn’t mean much. Maybe it was not a show of hand.

Copyright 2014 Sarah Meyer Noel. All rights reserved.

Working on Catharsis

Ten years ago while chatting with friends at one of my son’s Little League games, the topic of high-maintenance parents came up. After others told stories of their parents’ and in-laws’ outrageous selfishness and demanding behavior, I told the tale of the laundry on my wedding day. My friend Janet, who has a full set of unreasonable parents and in-laws, was stunned. “That’s the winning story,” she declared. And everyone else agreed. That was the moment I really realized how unusual my mother is.

Going public with that hidden side of my life that afternoon and seeing my mother’s actions through other people’s eyes offered confirmation that I was allowed to look analytically at my mother’s behavior and acknowledge the damage. I hoped – and still do – that this honest reflection will help me escape from some of the ingrained messages she that raised me on and I have – perhaps pathetically – not completely outgrown on my own.

I love my mother and don’t want her to feel bad about herself. She’s not going to change, and I don’t want to hurt her. I don’t want her to spurn me the way she did her mother when she saw that she was being criticized. I don’t want her to read this.

I wrote this not to hurt her or anyone with Aspergers, though I know some of what I say about this condition will wound and infuriate some people who have Aspergers or who love a child whose brain is wired this way. I really am sorry to open that wound. I know my experience is hard, maybe impossible, for you to accept.

In part I wrote this to tell myself to rewire my brain to accept my mother as she is, not as I thought she was and always wanted her to be. It’s so hard to stop wanting to believe that she loves me like I love my sons. I still want her to care about more than what I can do for her.

I wrote this for people who could be open to learning from my experience. One reason I decided to write it in spite of my mother’s feelings and my relatives’ reasonable expectations of privacy and my own dread of being attacked is that I believe I am presenting an important perspective that is thoroughly overlooked, especially as Aspergers awareness grows. The impression delivered by most material about Aspergers is that everyone who has this condition is a child and that this syndrome, while presenting some challenges for families, is also a kind of gift to the world, and the only missing piece is acceptance and accommodation from everyone else. Aspergers does present some gifts, but they are not free.

I know that all loving parents passionately need to believe that their child is what we all imagine: healthy and smart and able and loving. I understand that parents of children on the autism spectrum, already heart-broken by the diagnosis and worried about how everyone else will treat their child, want and deserve the best possible outcome and the kindest possible world for their children. I understand looking for some other form of specialness that compensates for the difficulties that most people with Aspergers face. I struggle with worry that this book will cause more suffering for these families. I suppose this concern is why almost no attention is accorded to the children of people on the autism spectrum.

It may seem cruel to want to be heard since my message isn’t heartening, and I can’t spin it as a rainbow after the storm. Even so, I can’t agree that out of consideration for parents of children with Aspergers or for adults with Aspergers, I should not dare speak of what it’s like to be a child of a parent with this brain type. I know this is a generalization, but I think it’s fair to say that most children of parents with Aspergers grow up as witnesses of our parent’s enthusiastic interest in something other than us, while we learn to be useful to them and take care of ourselves. We cling to the hope that our parent will one day drop the mask of indifference to reveal a hidden true self, to love us after all. We’re used to not having our needs and feelings considered, and every time I feel bad that I am being hurtful and shouldn’t present a realistic portrait of a parent with Aspergers, I remind myself that the issues are no less true if no one is willing to bring them up.

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.