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

Rapists Cause Rape. Everything Else is an Excuse.

This blog would seem to be off-topic. But in the broader sense, I write about people who lack empathy, so this qualifies. This blog is a response to the 6-month sentence recently given to a Stanford athlete who raped a woman who had passed out after drinking too much at a party. The rapist’s father wrote an appalling appeal to the judge before sentencing, in which he complained that his son was being punished too much for “20 minutes of action.” 

I am struggling to believe that there is an American father out there who lamented to a judge that his son is so devastated by a rape charge that he has lost interest in ribeye steaks. This predator was caught in the act of raping an unconscious woman, and his father thinks his son’s loss of interest in steak and the forfeiture of his Stanford scholarship are too much punishment for his 20 minutes of violent crime and human exploitation.

Hey, Dad of the Decade. Guess what? The Stanford scholarship should have been reason enough – in case morality, empathy and human decency don’t matter to your son – to check his willingness to commit a soul-crushing attack on an innocent woman. But she was drunk, and he thought he could get away with it, so a life of ribeyes and privileges and staying off sex-offender registries is now gone. Not because of alcohol or over-zealous justice. But because he chose to rape. Not because he drank too much. But because he chose to rape.

I have two sons about the same age as the steak- and privilege-loving Stanford man. I don’t know how parents can live with the horror of a son who feels entitled to rape. Like other parents, I can’t imagine discovering that I am the parent of a rapist. Would I be in denial? Would I make excuses? Did I do enough to raise my sons to understand that you never take advantage of other people – even when it’s easy to do so? Even when your parents can afford great lawyers who can try to make the victim look like she deserved it?

I am trying to empathize with this father. But to do so, I would have to seal off my empathy and compassion for the victim and for all other victims of rape. I do get the desperation of trying to create a narrative that maintains your cherished view of your son as a good person. But good people don’t rape. I know that must feel like the edge of a cliff, and you are desperate to find a way to get back to safe ground.

But here’s the problem: when you are so defensive of someone you know and love that you forget that there is an actual victim, you are once again horribly violating an innocent person. Blaming the victim for drinking is entirely beside the point. Getting drunk and passing out does not mean you deserve to be raped. It just makes it easier for the rapist.

This comment from one of the rapist’s defenders is such an excruciating example of twisted logic that it shouldn’t even need a critique:

“rape on campuses isn’t always because people are rapists”

So. When is there a rape without a rapist? There isn’t. This apologist, Leslie Rasmussen, also complained that defining this rape as a rape is a mistake of excessive “political correctness.” Calling rape what it is – rape – is not political correctness run amok. It is facing a hard truth. And how about a year’s moratorium on using excessive political correctness as a shield for inexcusable behavior?

One more thing, Stanford dad. The woman your son raped has probably lost her care-free spirit and her interest in a lot of things too. Things even more significant than steak appreciation. Being raped is so many times worse than voluntarily blowing your scholarship that I wonder what is missing in your heart that you can’t see that. Your plan to have your son bare his soul to high school students about drinking and promiscuity is so far off the mark that I have to wonder if you know that neither raping nor being raped is promiscuity. Rape is violence. It is predation. It is a show of remorseless privilege. Your son didn’t rape because of a perfect storm of conditions. He raped because he could.

Copyright 2016 Sarah Meyer Noel. All rights reserved.

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

The Sunrise Experience

I know that what I write about my mother is hard to read. I understand the desire for a silver lining or upbeat message to offset the negatives in my stories of having a mother on the autism spectrum. I keep looking for those miracles too.

So here are some positive stories about my mother.

One summer morning when her four children were very young (I can’t have been more than 5), she woke us up before dawn and ushered us to the backyard to see the sunrise. I still remember that morning. We sat quietly on the patio, listening in the dark to the birds narrating their search for breakfast. We ran to the front porch when we heard the milk man arrive to fill the metal box with glass milk bottles. We had never seen him before and had never thought about the man or the journey of our milk. We sat back down as the light colored the sky and the neighborhood began to issue the cadence of their awakening.

My mother wanted her children to share her interests. She read us the books she’d loved as a child and wanted us to love them too. She taught the first three of us to play bridge when we were in grade school and sometimes called us to the dining room table to play with her.

She volunteered to be the librarian for our grade school when they started a library. My sister and I would sit with her on her white bedspread covered with lists of books on long sheets of paper, discussing which books she should buy for the school. She let us feel that she respected our opinions.

She – and my father too – made sure we did not absorb the racist messages that were pervasive in the Southern city where we grew up. We heard from our parents that racism was wrong and that people should not be judged by skin color. We learned that we could hold a minority view and be proud to express it.

My mother cannot help her lack of empathy and her obsession with her stresses and needs. I know the world is a challenge for her, and I appreciate that the mysteries that confront her daily have not made her mean.

Copyright 2015 by Sarah Meyer Noel

Mother’s Day When Your Mother Doesn’t Care That Much About You

I saw a series of photos online today that showed mothers and daughters on the daughters’ wedding day. The pictures, must of which showed the bride getting ready for her wedding, were full of joy and caring. When I look at these pictures, I can’t help but feel wistful. My mother had no interest in being involved with any aspect of planning her daughters’ weddings. Nor did she want the traditional scene of helping her daughter dress. My mother didn’t want to be with me to adjust my hair or zip up my dress or tell me that she was happy for me. She did, however, want me to do her laundry after the reception.

It’s 3:00 on Mother’s Day, and I am ambivalent about calling her. It’s not that she doesn’t love me in her own way. It’s accepting that her way of loving anyone else is so shallow. I know she feels love, but she does not feel for her children. We have always been valued for meeting her needs. She has always been unable and unwilling to think about ours. She’s never known how to comfort us or think about what is in our interest. She has always been so preoccupied with her own.

I know she can’t really help it. Her obliviousness to us and her singular focus on her fears and needs comes from her brain wiring. That’s just a harsh fact I have to accept.

She takes me down from the shelf in her mind when she needs me. Otherwise, I don’t hear from her. I’ll call at some point today. I’ll listen to whatever she is worried about and try to calm her fears. I know the limits of the relationship. But there’s still a deep part of me that can’t give up hoping for more.