Category Archives: Uncategorized

No Need to Apologize

My mother stopped calling me nine months ago. I stopped calling her too.

And I don’t miss her.

The last time she called, September 11th, she was agitated about having forgotten my sister’s husband’s birthday, which was the next day. My sister and I had taken on her responsibility for birthday gifts for her descendants more than a year before. My mother loves handing off all her responsibilities. There really isn’t anything besides chewing her own meals that she would not prefer be done by others. In other words, when my sister and I offered to deal with gifts for her, she was delighted.

So when she called about my forgotten brother-in-law, I assured my mother that we’d already arranged a birthday gift. This kind of assurance must be repeated several times before she can accept it (she wants others to do everything for her, but she never really trusts her agents). She calmed down, we chatted about other things, and then she never called again.

My birthday, just six days later, passed without her usual call. When she didn’t call for days afterwards, and then weeks, I thought she had realized that she forgot to call me on my birthday and was unwilling to apologize. She is always unwilling to apologize.

Weeks accumulated into months. No calls. And I didn’t call her. I admit it was nice not to be sucked into her fears and worries and her resistance to advice or my efforts to dial back her distress. I know she thinks of me – when she thinks of me – as someone to call as needed. Her needs, of course. Mine are not to be acknowledged.

I have spoken to her twice since the forgotten-birthday call. On Christmas, my sister and her family visited my mother. My sister called me and put my mother on the phone. My mother breezily remarked that we hadn’t talked in a while but brushed on past that comment to discuss what she got for Christmas and what she planned to eat for Christmas dinner.

A few days after Christmas, I called her. We had an unremarkable conversation. She hasn’t called me since, and I haven’t called her. My sister has suggested that our mother has lost my phone number. That may be true, but she could ask my sister for the number. She has not. She did call her financial advisor in mid-March to complain that I hadn’t done her taxes yet (I have never done her taxes and have never discussed doing them, but she has fixed in her head that I told her I would travel 1500 miles to do her taxes in person). Instead, I arranged to have my nephew take care of her taxes. And I noted that my mother still has her financial advisor’s number. Just not mine.

I no longer think this silence has anything to do with my birthday. I think she has discovered that it is easier to call my brother-in-law with her worries. Now semi-retired and working at home, he is the only person in her life who answers all her calls. He is calm and pleasant to her even when she calls several times before lunch. My sister and I have long limited her to one call a day by leveraging the power of voicemail. Well, I guess I can’t say I have to enforce that limit anymore.

Sometimes I wonder if I am behaving badly by not calling her. But this isn’t some contest of wills. It is another acknowledgement that she doesn’t care about me. She found someone easier to call. So why bother with me?

Advertisements

To My Mother, Life is an Iceberg

Three years before my paternal grandmother died, my 60-year-old widowed mother relied on her children to move her from a St. Louis suburb to Decatur, Georgia. My sister, who lived in Decatur, found a nearby condo for her, and the other three of us did every single thing required to pack and move our mother to a new home.

In Georgia, my paternal grandmother lived five miles away from my sister Anne and my mother. Grandma Meyer had been a wonderful grandmother, doting on us when we visited when we were kids. She was the only adult who ever really showed my siblings and me any love.

During these visits to my grandmother’s house, which were days long several times a year, we rarely saw my parents. That was fine with us. Grandma was devoted to our happiness. She was delighted to make things for us; she loved to see how thrilled we were. She baked coconut cakes, she dragged out big boxes of toys, she played cards with us, she nurtured inside jokes, she filled the cookie jar, she stood cheerfully at the stove in the morning, spatula in hand, to ask each of us what we wanted for breakfast. Unlike our mother, Grandma never made us feel like we were trouble or that we weren’t important to her.

My mother had known her in-laws since she was a teenager. As far as I could see, her in-laws were nice to her. But my mother never seemed to want a relationship. Once Mother settled into her Atlanta condo after my father died, she could have spent some time with her widowed and lonely mother-in-law, who didn’t drive. My 60-year-old mother made no attempt to work again, she was healthy, and the route to my grandmother’s house did not violate any of her too-dangerous-to-drive rules. But she never visited Grandma unless my sister Anne took her. And Mother agreed to accompany Anne and her boys, who visited weekly, only a small handful of times in the three years from the time she moved to Atlanta until the day Grandma died.

So at a time when my mother and her mother-in-law could have built that long-deferred relationship, and when my mother could have paid back some of the care-giving Grandma had provided for her children just by showing up and keeping her sick mother-in-law company, my mother ignored her.

When I came to town from Boston with my six-month-old firstborn about six months before Grandma died, I brought him over to her house so she could meet him. Anne came along, but Mother didn’t.

It was a joy to see how thrilled my grandmother was to see my son. She loved babies, and he was a happy baby. He sat on the living room floor and picked up some of the toys that we had played with so many times, toys that she had gone to the trouble to pull out and display for him even though he was too young to do more than pick them up and drop them on the soft living room carpet. It was the last time I saw her.

Shortly after that visit and two years after Mother’s relocation to Atlanta, Grandma’s health had clearly become an issue. She resisted seeking treatment and hid her symptoms as long as she could. By the time my uncle, her only surviving child, finally got her to a doctor, her colon cancer was too far advanced for treatment to make any difference. But the prospect she’d feared the most, surgery, was necessary anyway. Without surgery, she would have died of an excruciating obstruction. She spent her last months back in her house, in pain from the effects of the surgery, afraid, sometimes delirious and sometimes alone. My mother never visited.

When Grandma died, it was summer. My son had just turned one, and I brought him when the family assembled at Grandma’s house after her death. My siblings and I lingered in each room, pausing to absorb the feelings and share memories, trying to grasp that she was really gone and that this was the last time we’d be in this house where we’d always been happy and felt more loved and safer than anywhere else in the world.

I wanted my grandmother’s red-handled spatula, the one she used to flip so many pancakes for us, a tube of her dark pink lipstick, a bar of her trademark pink Camay soap and the round box of bath powder she used to dust our backs after we got out of the tub, before we climbed into the brass beds in her house that was a kind of sanctuary to us.

My uncle took charge of doling out Grandma’s furniture and disclosing the will. There was an issue with the will, one that catapulted my normally docile mother into high panic. The will specified that the estate was to be divided equally among my grandmother’s three sons or directly to their children in the event that any of the sons predeceased her. Two of her sons, including my father, had already died, which meant that my siblings and I would get our father’s third.

Among her important papers and the copy of the will, my uncle had found a hand-written note from my grandmother. The note, written shortly after my father’s early death, declared that my father’s share should go to my mother rather than pass to the grandchildren. This note wasn’t legally binding, and my uncle announced that if my siblings and I all agreed, he would have the lawyer draw up papers for each of us to sign, yielding our claims to the estate to our mother. All four of my mother’s children immediately agreed to this. It should have been no problem. My mother should have been pleased. Maybe even a little appreciative.

But Mother, usually so passive, never interested in taking the lead on anything, was on fire. She could not rest until each of us had signed the papers and the big check was hers. Once we got back home, she called every day to see if we’d gotten the papers, to ask if we’d signed them, to find out when we’d mail them back and to demand to know why it wasn’t done yet. It didn’t matter if we assured her that we’d take care of it. No one even hinted resistance.

But, as my brother Dan said, it got insulting after a few calls. If our responses seemed too casual, if there was a small sign that we might not be making this process the single top priority in our lives, she burst into angry remonstrance. She needed that money! Why hadn’t we done this yet! Didn’t we understand how much she needed that money! What was the hold-up?

Dan’s papers were the last ones in, so he caught the most heat. He told me that he would have done it sooner if she hadn’t treated him like he was going to keep her from getting the money. And if she hadn’t acted like the only thing that mattered about our beloved grandmother’s death was how it affected her bank account. Just like she did with our father.

But it’s not money per se that she animates her so intensely. She doesn’t care at all what other people think about her relative wealth or her possessions or how she dresses. In fact, she prefers to play the poor widow so people take pity on her. But not having the security of an insurmountable fortress of effortless money is stressful and frightening. Money is the safety and the freedom not just from the nightmare of job demands and critical bosses, but from having to face the mystery of the world, the puzzle of other people and the work required to please them so they give her what she is so certain she must be given.

Life is an iceberg to my mother, and money is protection from having to worry about more than the surface 10% that she can see.

Ranking the Grandchildren

My mother is quite clear about her order of preference for her seven grandsons. We all know that Anne’s younger son John is number one, a position I believe he claimed by saying a lot of clever things in her presence when he was a boy, statements that are permanently and liberally recorded in her diaries.

Ironically, Anne’s older son Jay originally held down the least-favorite position, a position I believed he secured by not saying enough clever things in her presence when he was a boy, as evidenced by the paucity of his quotations in her diaries. He has been supplanted at the bottom, however, by one of the younger grandsons. This new holder of the lowest rank is likely to remain entrenched there because my mother doesn’t like his behavior at all and has developed detailed fears about his future. She copes with his issues and unbearable future choices by ignoring his existence. “I try not to think about his future any more than I need to,” she has stated more than once.

I admit it is easier for me that my two sons, who live too far away to be useful to her, fall into the middle of the rankings. She has told me that they are both “good-natured,” which is nearly as good as her highest designation for other people: “so understanding.”

I’m not sure exactly which of my two is higher ranked. Parker, my elder son, has accepted the thankless task of helping her get through security at the airport, so that’s gotten him praise. And he’s quiet and polite and does well in school, so he’s right up there. But though she has also praised his ease in conversation with adults, there are some challenges to a claim to the number two spot: he doesn’t look at all like her side of the family, he never asks to hear her stories, he does not attempt to entertain her, and he is enrolled at a college she didn’t attend, where he is majoring in engineering, which she doesn’t understand and does not want to hear anything about.

Wyatt, my younger son, is athletic and amusing, providing a good source of entertaining stories that I convey to her. She was excited when a picture of him in his high-school football uniform was published in our local weekly paper. But on the other hand, he isn’t interested in directly telling her much himself or in listening to her reminisce, which marks down his value. And although he played Daddy Warbucks in the school production of Annie in fifth grade (wonderful!), he steadfastly refused her appeals to re-enact his role for her (so disappointing!). Naturally she couldn’t possibly have flown up to see him in the actual play.

My brother’s son who has Aspergers does well in school, and Mother loves any trait that she can believe shows her genetic superiority. He’s pretty quiet and sweet-natured, and even his quirky behaviors don’t happen to irritate her and risk his score. But he has not wanted to hear her stories, and while they both have fixed interests, the interests themselves do not overlap.

The youngest grandson committed a shocking misstep that permanently hurt his rank when he’d just turned two. That summer at the beach, he enjoyed pushing her walker when she wasn’t using it. While some grandmothers might think this was cute, the two-year-old’s enjoyment earned a harsh, “That’s not a toy!” from his horrified grandmother and a black mark on his permanent record. If he spent time adoringly listening to my mother, that longed-for devotion could overwrite the shocking walker-pushing incident and catapult him into the firmament next to John, the untouchable number one.

But tragically none of the grandsons has clamored to hear to her stories or put on plays for her. She thinks that’s because they’re boys. She hasn’t considered that perhaps it’s because she has shown no interest in them, never visits them and has made no effort to connect with them.

The grandsons are aware of the favoritism among their ranks and joke about it. Still, it must hurt number 6 Jay at least a little that his brother is adored while he is barely tolerated – even though he goes over to her condo to solve her many computer issues whenever she calls. Anne and I have tried to figure out the sources of her disdain for Jay. But we don’t know why. I guess he just failed to amuse her.

Well, there was one other incident. She bitterly complains about the time then-college-student Jay brought a paperback book with him to a family dinner at a restaurant, took it out of his pocket and placed it on the table during the meal. He didn’t read it or anything. He just took it out because it was uncomfortable in his pocket.

This scandalous display occurred at a meal he was invited to attend when my family and I were in town. So I was a witness, though I admit I thought nothing of it at the time – well, beyond some amazement that he could fit a book in his pocket. This wasn’t a fancy restaurant; it was a casual place with paper napkins, but she talks about it as if he’d taken off his shoes and put them on the table. The point is that Jay can do no good, just as his brother John can do no harm. If John put a book down on even the fanciest restaurant table, she would proudly comment on this delightful evidence of how much her favorite loves to read.

All of my mother’s grandchildren have only my mother for a grandmother. I feel sad that my kids have no experience of a warm and loving and helpful grandmother. I wish they had a grandmother like I had, my paternal grandmother who loved to see us and enjoyed doing things with us and for us, who never made us feel like we were any trouble at all.

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

I Ruined My Mother’s Christmas

My mother called Christmas morning a few weeks ago as my family was eating breakfast. Right away I put the phone on speaker and cheerfully called out, “Merry Christmas!”

Her tragic-voice reply: “Well, I hope you still think it’s merry when I tell you what’s happened.”

What horror had derailed this festive holiday? A death in the family? Some terrible health news? Well, no, nothing like that. I have to travel back a few weeks to set the stage.

Just before Thanksgiving, my sister called to bemoan that our 86-year-old mother had decided that her bedspread must be replaced. That unacceptable piece of linen was a quilt my sister had made for her some years ago. It looked fine to me the last time I saw it, but suddenly it was no good. And there is no talking her back once she has decided she needs something. Anne was pressured to commence quilting a new one at once. Anne, at her limit on all the demands my mother makes on her time, declined.

When one of us says no, my mother starts shopping among her remaining children. She called me to tell me to get her a bedspread for Christmas. The requirements:

  • Light weight
  • Soft
  • In the colors she likes (yellow, orange and aqua)
  • Manufactured specifically for her (unneeded) hospital bed. (This is not actually a size, I discovered after a search. I guess no one makes a special bedspread for this bed since most people with hospital beds are too unwell to worry about decorative bedspreads. But still from 1434 miles away, I am supposed to make sure the fit is perfect.)

I found a fleece spread that I thought would fit and would be lighter and softer than a traditional bedspread. It was a subdued aqua with a cream pattern. I thought it was just what she wanted. I mailed it, along with some packages of homemade cookies she asked for.

But on Christmas morning, in a voice one might use after opening a box that contains a severed head, she reported that the bedspread was unbearable. It “dominates the room!” she cried. She explained that she never returns gifts or complains about them, but this room-swallowing spread was so upsetting that she must break her long-standing tradition.  I knew I was meant to assure her that I would sweep away the offending linen and replace it asap with whatever the hell it was she meant me to get for her but forgot to call out in the list of specifications.

But I refused to bite. There was nothing particularly garish about the spread. The dark aqua was not neon. The pattern was not one that might trigger a seizure. I have no idea what she meant about the monstrous room-dominating quality of this fabric pattern. And, yeah, I don’t actually appreciate her saving a lifetime of “never complaining” about gifts to so heartily reject mine.

I told her I was sorry she didn’t like it and suggested she give it to my sister or her son. I could tell she felt ship-wreck-level abandoned by my unwillingness to champion her cause.

Later that day, I talked to my sister, who told me that when she and her son had dropped by that morning, Mother had been even more upset than she had been on the phone with me. The horror of the spread had ruined her Christmas! She was beside herself, yet Anne ignored the gauntlet that had been tossed in front of her. I have no way of deciphering how much of my mother’s emotional outburst for Anne was reflective of her feelings and how much was an effort to manipulate my sister into taking charge of the bedspread-replacement dilemma. But still Anne deflected. The spread crisis was left unclaimed. The horror!

My mother, perhaps because she has so little empathy, has zero friends. Her only visitors are a minuscule contingent of close family and a very kind man from her church who spends some of his retirement hours helping aged parishioners. It’s possible that her quilt is a little worn, but she is neither freezing at night nor left to appear to be a tattered mess to my sister and her church helper. She has zero fashion sense. Her ill-fitting wardrobe is from a polyester fashion empire that advertises in People Magazine. So what is the bedspread emergency? And why couldn’t she keep her disappointment to herself?

It’s been over a week since Christmas, and I haven’t spoken to my mother.  She called once, and I let it go to voicemail (which I haven’t bothered to check since every voicemail from her is the same: “Oh, Sarah? It’s [fill in her current time, which I don’t need to know]. Give me a call when you get a chance.”).

I get that it’s frustrating to believe you are helpless, and I know it’s hard to manage the world with autism. But she has always been completely unwilling to solve her own problems. Never mind that many of the things she considers critical needs requiring the urgent attention of her children are not in fact problems.

Maybe the saddest part of the story is that some part of me is still that needy and neglected little girl who is trying to find some way to get a little love from the kind of mother who is too obsessed with herself to think of anyone else’s feelings. And, yeah, it torments me that by trying to please her I ruined her Christmas.

I know I sound bitter. Maybe heartless. Maybe low on the empathy that I criticize her for lacking. But what I feel, after all these years, is hurt.

copyright 2017. Sarah Meyer Noel

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.

Inspiration

I haven’t posted much for a while. I’ve been feeling discouraged because my perspective is at odds with the prevailing narrative of autism, and I know mine is a story that can hurt the feelings and hopes of other people. The author of one comment on this blog told me I was harming people with autism by telling my story.

So should I just keep this story to myself? Should I just get over it?

Nearly all blogs and articles I read offer the same messages: that autism is a problem only because other people aren’t understanding and supportive; that people with autism don’t really lack empathy; that good people wouldn’t change anything about their loved one with autism. Because I can’t say those things, because I have chosen to articulate the difficulty of my experiences as a child of an autistic mother, because I do wish my mother could change, the implication is that my story is unspeakable, and I must be a terrible person.

I’ve been thinking that my story and my views are intolerable unless I can get to a state of mind that not only forgives all of my mother’s hurtful behavior but goes as far as embracing it. To be a good person, I need to be able to say the same things parents of ASD kids say:  that in spite of the challenges, my mother is warm and funny and loving, and I don’t wish she were any different. I really do wish I could feel nothing but admiration and compassion for her challenges in making her way in a world she finds so stressful. I wish I could release the hurt I’ve felt when her choices have shown that she is oblivious to my feelings, that her feelings for me are shallow, and that our relationship goes only one way. But so far I can’t. And I can’t even convince myself that I should. It seems dishonest and goes beyond self-effacement.

If I had a magic wand, I would give everyone on the autism spectrum the gift of empathy so that they could understand how to address other people’s feelings and needs. I would give them peace from the stress that fills so much of their hearts. So, yes, I would change them if I could. And that has become a forbidden wish.

I don’t want to demean or belittle people with brain wiring that they did not choose. I understand it is awful to know that some people think you need to be different in a way that you can’t control. How can I live with myself for wishing this – since it means I am implying some people are fundamentally flawed? Am I just as heartless and ignorant as people who are racist or who think homosexuality can be cured?

I read something a while ago that gave me some hope that perhaps more realistic and difficult viewpoints about autism can find a place:

In “What We Can All Learn from Autistic People in Love,” by Emily Shire, which appeared online in The Daily Beast,[1] one of the subjects is a woman with autism named Lindsey. Lindsey says, “’The media has the tendency to twist something into what the disability community calls an ‘inspiration story,’ putting us on a pedestal as inspiration objects rather than treating us as real people,’ she explains. She didn’t want to be dehumanized.’”

The most important idea that Lindsey expressed – to me anyway – is that it’s both unrealistic and condescending to insist on portraying people with any kind of disability as an inspiration. It’s wrong, I agree, to insist that all messages about disabilities have to suppress any negative consequences. And it’s not helpful to recast a disability as no more than difference.

We’re all flawed. We’re all struggling. We all could use some understanding. Sometimes our needs are in conflict. Sometimes even the most empathetic of us can’t soften our hearts. Sometimes we all have to be accountable.

I needed a mother with empathy. I still do. I think we all need that. Some people don’t have empathy, and that, I believe, is profoundly tragic. It’s so tragic and important that I think it is absurd to silence the message even though I know it hurts those people who don’t have empathy. And I include people who insist they do have empathy but they just don’t know how to express it – because the truth is empathy matters when the other person can see that you can act on it, when you can set your needs aside for someone else’s.

I think I’m being brave to write about my experiences, especially when my view is unpopular. I know some people will think I am cruel and bitter and should be silent unless I can be cheerful and supportive.

But if I keep it quiet, it’s still true.

[1] http://www.thedailybeast.com/articles/2015/04/15/what-we-can-all-learn-from-autistic-people-in-love.html