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You can’t always get what you want

Christmas, 1985

I was eight years old and the Cabbage Patch Kids craze had taken over the holiday season. There was nothing I wanted more than to adopt one of those cloth dolls with the large plastic head and Xavier Roberts’s name autographed on its rear end.

We awoke extra early – even by Christmas morning standards – to help my brother finish his paper route. It was still dark when we returned home to the gifts waiting under our tree. When I finally unwrapped that doll that I had wanted so badly, I thought my life was complete.

Me with my Cabbage Patch Kids

My young self hadn’t yet figured out that no material possession would ever completely satisfy any desire I might have, or that the euphoria of obtaining something so treasured would quickly fade once I got what I wanted. Even now, as an adult, I still have to remind myself of this.

“I’ve been driving this car for so many years – I really need a new one. … That pair of shoes would be perfect for every-day wear, I should buy them. … Wouldn’t it be nice to live in a cabin in the country surrounded by nature, away from people and noise?”

It’s human nature to yearn for things, even when we know all too well that fulfilling our temporary longings won’t bring us permanent satisfaction. Wisdom advises us to value the people in our lives, not the material objects.

I have had various friends and acquaintances throughout my life, mostly during childhood and adolescence, but none has lasted more than a few years or so. Even when I spend time with people I like and enjoy being with now, I always leave with the sense that something’s missing, as though we tried but just couldn’t make a connection.

As much as I would like to have one true, close friend, I’ve come to the point in my life where I have accepted the reality that I will likely never be able to attain a friendship on a level such as the one I want. For people like me, friendships are elusive, rare, and fleeting.

Granted, any relationship between two people is naturally challenging and prone to conflict, but a relationship is all but unsustainable when one of the people involved in it has a difficult time relating to people in general. The odds of any relationship developing and surviving, in my experience, immediately plummet.

Most of my difficulty with making and obtaining friends lies with me. I know and accept this. For one thing, I don’t know how to approach people and develop a relationship in the first place, which I have previously discussed in my blogs titled This one time at band camp and Call me crazy. My struggle with initiating and maintaining friendships is well-covered territory, and I won’t rehash it all again here.

Researchers in Sweden studied 100 autistic men and boys over a period of 20 years in order to get a better idea of their friendships and quality of life. Approximately one quarter of the men said they had few or no friends, in which the term “friend” was loosely defined to include even people they simply saw from time to time. Interestingly, though, many of these men seemed happy with their lives.

Most people might assume that someone who has few or no friends is unhappy, lonely, depressed, etc. However, it’s worth pointing out that Dr. Leo Kanner, considered the father of autism, coined the term “autism” based on the Greek word autos, meaning “self.” He chose this term because the patients he studied and diagnosed in the 1930s and 1940s displayed a powerful desire to be alone, and ever since this has been a required characteristic for the diagnosis of autism.

Herein lies an eternal paradox that people on the spectrum deal with – living in a world with expectations that we are naturally incapable of meeting. We inherently have a strong desire to be alone, yet we have been conditioned by society to want and achieve all the things that normal people do because we live in a world designed for and by people who are not like us.

I have spent most of my life wishing that I could form friendships like other people, and feeling that my life was an incomplete, miserable failure because I didn’t have those relationships like everyone else.

It has taken me a lifetime to acknowledge and accept the reality of what is and is not possible for me. But now that I have, my life has become much easier and more enjoyable. I no longer hold myself to others’ expectations and don’t force myself to be someone that I cannot. I also no longer berate myself for being alone, and I thoroughly enjoy my own company.

I know that many relationships – or in my case, almost all relationships – only last for a season, and that you can’t always get what you want, or even what you think you’re supposed to want. But, if you try sometimes, you just might find you get what you need. And often that is enough.

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Driving out the darkness

My daughter and I go to a lot of concerts and musical theater events together. She is always concerned that I won’t be able to handle all the noise, people, and lights. Believe it or not, I love going to concerts, although I never leave home without my earplugs.

One of the things I love most about music is how it brings all types of people together. I was once again struck by this phenomenon while attending a Queen + Adam Lambert concert recently. Legendary British guitar player Brian May and drummer Roger Taylor were joined by American Idol runner-up Adam Lambert on lead vocals. There’s no question that Freddie Mercury is irreplaceable, but Adam gave an amazing performance. He didn’t try to imitate Freddie, yet still paid homage to the voice of Queen.

There were obvious differences among the concert-goers, such as age and ethnic background. And there were undoubtedly not-so-easy-to-spot differences. Political persuasion, sexuality, religion, ability/disability, etc. Yet we all sang and clapped along together to the songs we know and love so well. We will never all agree on everything, and frankly oftentimes it feels like we don’t agree on hardly anything. But for a few hours, we can come together and agree about something, even if only for a little while, and being a part of that feeds my soul.

When I ordered the tickets, I wasn’t able to get two seats together, so I opted to get one seat right behind the other. Needless to say, my daughter wasn’t thrilled with this arrangement and I admit it wasn’t ideal, but it was the best I could do at the time. Fortunately, there was a nice family sitting next to me who offered to switch seats so that my daughter and I could be next to each other. I thanked them profusely and repeatedly, yet still felt that my gratitude was insufficient for what they did for us. Thanks to their generosity, we were able to enjoy the concert so much more.

At one point in the show, Brian asked each person in the audience to hold up their phones and every corner of the arena filled with light. Surrounded by the glow, he said, “We need more light in the world right now.”

Brian May sits in the spotlight, surrounded by our light

As children around the country get ready to return to their classrooms, my thoughts anxiously drift to those students who need a little extra light from their peers and teachers to help them through the day. School is challenging enough as it is without having additional hardships to endure. Sending a child with special needs off to school is especially difficult, in part because there’s no way of knowing whether your child will be on the receiving end of someone else’s rush to judgment or their exercise in acceptance, and you can’t be there to help navigate any situation that might arise.

My son has been very fortunate so far to have had extremely understanding teachers and staff who have been able to see what a great kid he is in spite of his frustrations and challenges. I’m not sure how many of his peers are able to grasp that, though, and I worry as much about how they will react to him as much as how he will react to them.

Every school day around lunchtime, I think of him and wonder what he’s going through at that moment. Is he sitting by himself, or has he found a friend? Will his classmates accept him as he is, or will they decide he’s not enough like them to bother trying to get to know him? Will they invite him to join their table, or will they ignore him?

He’s allowed to eat lunch separately from everyone else if needed, in case he’s feeling anxious or just can’t handle all the activity going on in the cafeteria. If he starts feeling overwhelmed during class, he’s allowed to take a break and return when he feels ready. Little things like this have made an enormous difference in how he functions at school. It took us several years to figure these things out, and it took him quite awhile to be able to recognize when he needs help before things spiral out of control, but his situation would never have improved without the cooperation and determination of his teachers and administrators. We will never be able to show or articulate our appreciation to them sufficiently, although we do keep trying.

All this talk of light has reminded me of a quote from a sermon that Dr. Martin Luther King wrote while in jail for non-violent protest and later delivered in November, 1957.

“Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that.”

May we strive to fill the dark corners of the world with our light and love.

This one time, at band camp …

I really did go to band camp. Twice, actually. This first time was in the summer of 1992 when I was 14. It wasn’t my idea and I really did not want to go. Spending several days with total strangers was not (and still isn’t) my idea of a good time, even if music is involved.

I spent two weeks living in a dorm at the University of Kansas where I didn’t know a soul. All I remember about my roommate was that she was from Falls City, Nebraska, and was in training for cross country. We didn’t exactly hit it off.

Fortunately, there were two girls in the room next door who befriended me and took me under their wing. Claire and Kate were best friends and both played double-reed instruments. I learned about Claire’s love for Billy Joel and the Carpenters, and Kate’s sister who had the exact same first, middle, and last name as my cousin. They showed me how they made their own reeds and let me tag along with them for the week. The following summer I went to a different band camp that my new friends invited me to attend with them.

Me at age 14 with my dog, Dixie

The friends-by-adoption strategy is how I’ve operated socially my entire life, whether it was with a neighbor child, someone I sat next to at circle time in kindergarten, or people in the room next door at band camp. Although I have had friends over the years, I never make the first move at developing a relationship with someone else, and I hardly ever invite anyone to do anything with me unless I know for sure that they will say yes.

Let’s fast forward a few decades. In 2014 I attended my first national convention as a piano technician. I was new to the profession and didn’t know anyone outside of a few people from my local chapter who I’d briefly met at a few monthly meetings. On one hand, it felt really good to be around other people who spoke the lingo and had an understanding of what I do. But on the other hand, it was like trying to join a club when I hadn’t been invited. No one was rude or anything, but many of the people there had known each other for decades and attend conventions just to hang out with their old friends and socialize, unlike me who didn’t know anyone and was there solely to learn.

Although I did learn a lot, I felt like an intruder the entire time I was at the convention. I skipped the formal dinner on the last day, even though the meal ticket was included with registration. I didn’t want to spend an entire evening trapped at a table seated between strangers making small talk. “So where are you from? How long have you been a piano technician? What made you decide to want to do this for a living?” No, thank you.

I’m sure most people have some anxiety about being in an unfamiliar surrounding where they don’t know anyone. From what I’ve observed, people who are good at socializing seem to overcome any anxiety they might have fairly quickly as they become comfortable in their surroundings. But for people like me, it’s not just anxiety, it’s paralyzing fear and it doesn’t usually go away very quickly, if ever.

I have never been able to approach someone I didn’t know and strike up a conversation, unless I had a specific purpose for doing so. For example, I attended a regional political training session a few weeks ago and one of the speakers offered to come train local groups individually. After the session was over, I approached him and asked him to come speak to the people in my county. I knew he was going to say yes because he had just offered to do exactly what I was going to ask of him. That I can do, but if there’s no certainty of a topic of conversation and I don’t have a specific reason to talk to someone, I cannot do that. And by that I don’t mean that I just can’t bring myself to do it psychologically, I mean I can’t do it physically.

The best way I can describe it is that it feels like the thoughts inside my head get tangled up with each other and I can’t formulate the necessary words. Any words I do come up with get stuck somewhere in my throat and I can’t force them out. All the while my tongue feels like a heavy, immobile object.

This inability to speak at certain times is called selective mutism, which occurs when someone is fully capable of speaking and understanding language, but is physically unable to speak in certain situations. For example, a person with selective mutism might be able to speak comfortably and freely at home or with people they know well, but is unable to do so in an unfamiliar or pressured social situation. Although not universal, selective mutism is common for people on the autism spectrum.

If you don’t understand what selective mutism is and why it occurs, it’s easy to assume that someone who doesn’t converse in a normal way is shy, socially awkward, rude, or maybe even a pretentious snob. In reality, while he or she might in fact be any or all of those things, the person having trouble getting the words out might also be fighting an inner turmoil that you know nothing about.

She understands that there’s no way you would know this unless she told you, but, of course, she can’t. All she asks is that you be slow to judge and quick to understand.

A stimulating conversation

I can clearly remember the first time I was cognitively aware of feeling really different than everyone else. I was probably six or seven years old, standing in our backyard, looking at a maple tree. It was almost as though I was looking through binoculars, but instead of using binoculars, I used the outlines of my nose as though they were the curved edges of the sides of the lenses. I lined up the tree exactly in the center of my visual field and purposefully blinked, as though I were taking a picture of the centered tree in my mind.

At that moment, I was fully aware that what I was doing was unusual, and even thought to myself, “I’m pretty sure no one else does this.” Ever since then, I have had the habit of trying to center things in my field of vision and “taking pictures” of objects by blinking, almost as though my eyelids are camera shutters, so as to capture an image in my mind. I am most aware of doing this when I’m sitting in a room trying to center doorways and windows, although most of the time I do it unconsciously.

One of the characteristics of autism is displaying repetitive behavior of some sort. This can be either verbal or bodily movements, such as hand flapping, rocking back and forth, repeating certain words or phrases, counting, pacing, etc. Some of these behaviors are obvious to others and some aren’t. These types of behaviors are called “stimming”, which is short for self-stimulating behavior.

Stimming probably seems useless to the average person, but is used as a way for an autistic person to calm themselves by providing something familiar to focus on, help them cope with stressful situations and the uncertainties of daily life, or simply for enjoyment or pleasure.

Oddly enough, this strange behavior of mine helps me feel calmer, especially in uncomfortable social situations. Aside from taking mental pictures, I have done other types of stimming over the years. When I was very young, my parents told me that I had a favorite blanket with satin trim that I rubbed between my fingers in order to calm myself down before going to sleep. In first grade, I used to suck on my hair until my teacher told me to stop, so I started biting my nails instead. (She didn’t like that, either, by the way.) When I got older, I flipped pens during class and the TV remote control at home.

I took a typing class in sixth grade, and ever since then I “type” out things with my fingers even when not at a keyboard – things I hear people say, thoughts in my head, song lyrics, road signs, license plates, things I read in a book, really anything with words, letters, or numbers. It’s imperceptible to most people; at most it probably just looks like I’m very slightly wiggling my fingers. Most of the time I don’t even realize I’m doing it. When I’m listening to music or have a song running through my head, I also finger the melodies I hear as though I’m playing the flute. It’s not very often that my fingers aren’t moving in some way or another. I also get certain words or phrases stuck in my head, as if there’s a soundtrack playing on a continuous loop. These words or phrases can be something I hear, think, or read, such as a street sign (“Do not enter, do not enter, do not … “) or license plates (GXI 792, GXI 792, GXI …), and of course I type these out, too.

No one has ever said anything about it to me, so I assume no one has ever noticed. As with any of my unusual habits, I have never tried to explain this to someone because I didn’t think that it would make sense to them, and even now it’s hard to describe my actions in words so that others can understand.

Below is a video I took of myself “typing” out the words as I hear them spoken on the radio. Hopefully this will give you a better idea of what I’m trying to explain.

Do many neurotypical (i.e., “normal”) people use some type of self-stimulating behavior, too? I would guess some of them probably do, although simply having some sort of repetitive habit doesn’t necessarily mean a person is autistic. It’s just one of many characteristics of autism. (See my Autism 101 post for the full list.)

Aside from the calming influence they have on me, my stims have other benefits. For one, I’ve always been really good at typing; I can type about 80 words per minute. And I have an excellent memory, partly, I believe, because of repeating things in my mind over and over again. I tend to remember a lot of trivial things that most people forget. Once again, this is where I make the argument for the positive aspects of autism.

So while these behaviors might seem strange or odd to you or others, stimming is very beneficial to autistic people. If it helps us and doesn’t harm anyone else, I can’t see the problem with it on a basic level. The real problem we face is the task of educating others on what it is and its usefulness to us. In that sense, we still have a long way to go on the road to understanding. Autistic people telling their stories and explaining their behaviors is a good first step.

The perks of being a wallflower

A gravel road in rural Iowa, photo courtesy of my aunt Carmen.

I grew up in a small farming community in northwestern Iowa, where the land is so flat you can see for miles and miles across what was once open tall-grass prairie. My father’s ancestors settled there after immigrating from Germany in the 19th century. I was a kid in the 1980s when the farm crisis hit and my dad quit farming.

In spite of that, my childhood was a happy time. It wasn’t perfect, idyllic, or without its troubles, of course, but it was enough for me. One of the things that I loved most about growing up in a small town was that everyone already knew me. I never had to introduce myself or tell anyone my entire life story. They knew my family, where I lived, what grade I was in, where I went to church, my hobbies, my personality, my quirks, etc.

In my last post, I wrote about the many characteristics of autism. One of those was insistence on things remaining the same. Things in small towns never really change much, at least not in a dramatic sort of way. New people and businesses hardly ever come to town. This isn’t good for the local economy, of course, but it was the perfect setting for me. Things were constant and reliable. Most people my age talked about getting out of there as fast as possible, but not me. I wanted to live there forever.

Unfortunately, all this made leaving home and going to college extremely painful for me. I never really wanted to go at all, but felt I didn’t have much of a choice in the matter. It was just what I was expected to do. When I got to college, I had a very hard time adjusting.

I didn’t really make any friends when I was away at school, except for one roommate. I ate meals alone in the cafeteria and didn’t live the stereotypical college student lifestyle of parties and constant social activity. I was in an unhealthy relationship, didn’t know how to end it, and didn’t want to end up completely alone if I did.

Even though people on the spectrum usually function better alone, that doesn’t mean that we aren’t unaffected by social isolation, whether it’s voluntary or not.

My son is 12 years old and has never had a friend, never been invited to another child’s house for a sleepover or just to play. I’m not sure how much this bothers him. He doesn’t talk about it. He’s happiest when he’s home and doesn’t seem to mind doing things by himself.

But I can tell you from my personal experience that feeling utterly alone in the world – particularly in a social situation where it’s clear that you’re altogether different from everyone else, such as eating by yourself in the cafeteria – hurts. It hurts a lot. It hurts in a soul-crushing kind of way, particularly during childhood and adolescence.

You might be wondering why I never just summoned the courage to introduce myself or start a conversation during those times that I struggled. I didn’t do those things because I didn’t know how. I must have missed the day in kindergarten when the teacher handed out the social manual for life. It always seemed that everyone else instinctively knew how to act in social situations except for me. Everything that I now know about social behavior took me many years of observation to learn.

I also hated seeing the way people reacted to me when I did put myself out here, like I was some sort of social pariah. When I went to freshman orientation the summer before college, all the students in the group had to introduce ourselves. I thought to myself, “This is my chance! I can start over where no one knows the real me and everything will be different!” So I started talking in a very bubbly, outgoing, valley-girl type of manner, as I had seen the others introduce themselves. I don’t remember exactly what I said, but it was obvious when I was done that it was not normal. The guide who was showing us around paused for a few moments and said, “Okaaaay … ” I still have the scar on my heart from that.

I’m telling you this not for pity or to make you feel like you have to speak to me if you see me at the grocery store. I’ve learned to deal with it over the years by trying my best not to place myself in certain situations and by mimicking others’ behavior in my own way. I’m at peace with my reality.

I’m telling you this because not everyone you meet will be in the same place as I am now. Especially the kid sitting by himself at the lunch table. Or the girl standing alone in the corner at the school dance. I was once them, alone and wishing for a way to make a connection, hoping for someone to reach out to me.

Over the years, I’ve gotten much better at adapting to change. Having three children has a funny way of doing that. Being a parent forces you to prepare for the unexpected. Having children has also taught me to see the humanity in people, especially in those who are on the fringes of society. One of the best things to come out of my experience is that I received an excellent education in compassion.

To those of you reading this who are comfortable enough to extend yourself a little for the sake of another, I ask you to do just that. I can almost guarantee that it will be weird, cringe-worthy, and a little uncomfortable for you. The other person might even react in a way that makes your effort seem somewhat unwelcome, mostly because they don’t know how to react. Do it anyway. They won’t forget how you made them feel.

After all, wallflowers have feelings, too.

Angels among us

Three stained-glass angels hang in my kitchen window, one for each of my children. None of my offspring is perfect, but they are each perfectly imperfect in their own way.

My oldest daughter is a lot like her father, personality-wise. She’s extremely affectionate and wears her heart on her sleeve. You know what’s on her mind because she will tell you before you even have to wonder. I’ve always loved that about her and wish that I were like that myself. She tries so hard to make the lives of everyone around her easier. I often wonder what I did to deserve her. I’m not sure she realizes she’s a teenage girl because she doesn’t act like one at all. (Except for her love of K-pop, that is.)

My youngest daughter is an extroverted social butterfly. She needs people. Her greatest fear at this point in her life is being left behind at home. She begs to tag along when I go to meetings or work. I once kept track of how many questions she asked me over the course of approximately five hours – the grand total was 130. If it weren’t for the strong physical resemblance, I might wonder who her real mother is.

On the other hand, my middle child clearly takes after me. From an early age, he showed characteristics that his father and I knew came from my gene pool. He’s highly introverted, enjoys being by himself doing his own thing, loves to stay home, and doesn’t usually display much affection to loved ones. When he was diagnosed with autism at age 11, I did a lot of research about his condition and discovered that a lot of the characteristics of autism also applied to me.

One of the first things I did after my suspicions were aroused was to take this online quiz. Eighty percent of people who score 32 or higher are subsequently diagnosed with autism. I scored 42, then took it again, changed a few answers I wasn’t completely confident about and scored 41. Full disclosure – I wasn’t trying to diagnose myself, but I did need to satisfy my curiosity about whether or not this was a possibility.

I also found this checklist about signs of autism in females that helped me recognize many characteristics that I never would have considered on my own.

Given what I suspected, I asked for a referral from the psychologist who diagnosed my son. He gave me the name of another doctor who specializes in autism in adults. I met with her three or four times, answered a lot of questions, told her things that I had never told another living soul, and completed some questionnaires. We discussed in detail the reasons why I thought I was autistic, and also delved into possible reasons why I might not be. In the end she came to the conclusion that, based on the information presented, the diagnosis fit me as well. It took forty years, but I finally had an answer about who I am.

If it hadn’t been for my son, I might have never known. Isn’t it ironic that our children teach us so much about ourselves? We’re supposed to be the ones teaching them, but end up in the role of student more often than we ever would have imagined.

Whether he realized it or not, my son helped me figure out a lot about myself and improved my life immeasurably. If that doesn’t fit the criteria for angelhood, I don’t know what does.

My journey

As much as I hate talking about myself, most of what I write here will be about me. Not because I enjoy doing so, but because I hope my experience will help others to better understand themselves or someone they know or encounter.

I was diagnosed with autism spectrum disorder (ASD) in December 2017, shortly after my fortieth birthday. What was it like for me to learn something so essential, fundamental, and life-changing about myself at this point in my life? Terrifying? Depressing? Shameful? Let me tell you what I felt.

Relieved. That might surprise you, but it’s true. After being frustratingly confused about myself for forty years, I finally gained understanding about why I am the way that I am. And the reason is not because of some personal failure or character flaw on my part. The reason is because my brain is wired differently. I have spent most of my life trying to be someone that I’m not because it seemed the world had no use for the real me. I’m not outgoing, extroverted, or a people-person. As much as I’ve tried to become all of those things, I can’t force myself to be someone that I’m not. After almost every social gathering that I attend, I go home wondering and lamenting why I can’t just be like everyone else. Now I know that it’s not a choice – I am not wired to be the life of the party. And now I know that it goes beyond just being highly introverted.

Honestly, I would have been extremely disappointed if the doctor had told me I wasn’t autistic. Surprised again? Autism has a social stigma. Some parents choose not to vaccinate their children because they believe it will save them from becoming autistic. Life is hard enough, but the autistic life is even harder. However, if I hadn’t been diagnosed with autism, I would have had to start all over again at square one in my search for answers.

Angry. I did feel a measure of anger. Not because of my autism, but because I wished I had known decades ago. Having known of my autism when I was younger would have made my struggle so much easier and would have kept me from searching for answers where none were to be found. I believe it would have saved me from periods of low self-esteem and depression associated with feeling like a failure as a person because I couldn’t conform to society’s ideal. Not much was known about autism when I was growing up and I can’t go back and change any of that, of course, but perhaps my story will help someone facing their own struggle today.

Hopeful. I know, I’m full of surprises. How could I possibly be hopeful to discover that I’m autistic? I’ve made it this far and, despite everything, my life is pretty wonderful. I have an understanding husband, three amazing children that are the light of my life, and, after a lot of searching, a career that I love. When you look at the statistics (more on those later), studies have shown that these things are difficult for many autistic people to attain. I am a successful adult and hope that others can gain some comfort knowing that being autistic is not necessarily a negative thing. There are a lot of positive qualities that autistic people possess.

And I am hopeful that I can help others to better understand autism. That’s why I started this blog. I hope you will join me on my journey.