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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.


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.


Without Connection

How much do I long for a heart-washing, heart-renewing reconciliation story? But every time I see my mother, every time I talk to her, I am reminded that my life-long fantasy will not come true. I try to reach out to her, to connect with her, but my mother cannot change. I can reach, I try to reach, but her arm is not able to rise. Her heart is not able to rise.

My Mother’s Fear Vortex

My mother is in a panic because her toilet is working just fine. The current condition of her plumbing is irrelevant to her fear that there could be a catastrophe at any time. Her confidence in the imminent disaster of her toilet refusing to flush properly is based on an incident the previous day. You know how sometimes the rubber flap thing in the tank does not properly settle down after a flush and just lets the water continue to circulate? Well, that happened to her, so now she is sure that the toilet has mutated into a source of volatility and distress in the form of ruthless unflushability.

She believes that her salvation can come only in the form of a visit from a plumber. And not just any plumber – the plumber she used when she still had a condo, before she moved into assisted living. The handyman at the assisted living center is not to be trusted with such a critical mission. If the center won’t bring in her plumber, I am supposed to call the center director and demand this service call for her. I am also supposed to devote as much of my time as she wants so she can relate every detail that led up to her view of this emergency (somehow this includes a tooth ache the week before…).

Both my sister, who lives a block away from our mother, and I have been called in on this crisis. I live almost 1500 miles away, but I got the call anyway because my sister was insufficiently alarmed and because I am already her top consultant on one of her passion topics: bathroom issues.

She cannot listen to messages that explain that her problem is minor or her fear is unlikely to materialize. Earlier this year, she was so adamant that she might get a blister from her orthopedic shoes that she spent $1000 on three different pairs of special shoes before she bought one she liked enough to silence the fear. One of those pairs of shoes, thick-strapped sandals with built-in orthotics, was rejected because she was afraid they might not offer enough support, and that might trigger a resurgence of arthritis in her feet.

With my mother, any fear is so urgent, so real, so devastating that everyone in her tiny circle must rush into action on her behalf. But here’s the thing: we rarely agree that she has a real problem calling for intervention, and we have learned that she won’t accept any solution other than the impractical one she has already etched onto the steel trap of her anxieties. Trying to talk her out of the fear is irresistible even though we know it is futile. We know that our reasoning never averts her fear.

For those of us who are regularly sucked into her fear vortex, the fears and her demands for feeding them are soul-sucking. They are love-sucking. They leave us with less compassion and her with more fear. I know that her fears and anxieties are an intrinsic part of her. I know it’s frustrating for both of us when I can’t resist trying to reason with her.

Today is the last day of 2015. I know it would be gracious and compassionate of me to make a resolution to be more understanding of her from now on. The thing is, it’s frustrating to always do all the understanding. I am not as sympathetic to her as she would like – and pieces of that limited sympathy come from the complexities of our relationship, from the old scars of having a mother who doesn’t understand her children’s needs or feelings or perspectives. I’m not prepared to surrender entirely to her. I’m not prepared to set aside my life because she might get a blister or her toilet might not flush. The best I can do with a resolution is to continue to try to be helpful to her without resentment, to try to be patient, to try to protect my heart.

Copyright 2015.

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