Paul McCartney recently said that he based the melody of Blackbird on J.S. Bach’s Bourree in E minor. The lyrical inspiration came from the Civil Rights movement of the 1960s. In British slang, bird is another term for girl, and McCartney explained that this song symbolizes black women’s struggle in the United States against racial and gender discrimination. Aiming to take a sad song and make it better, he wrote it to empower the powerless.
“That’s the magic of it all, that’s the wonder, because I wrote them with half an idea that they might help, but it really makes me feel very proud when I realize that they have been of actual help to people.” ~ McCartney in 2014, speaking of the songs he wrote all those years ago
Compared to many, my struggles in life have been few and far between. I had a happy childhood, a stable home environment, and the opportunity to go to college. I now have a wonderful family of my own and was fortunate enough to be able to stay home with my children when they were young. I am privileged to have financial security, access to health care, a roof over my head, and food on the table. I have been building a small business for the past few years, which has expanded to the point where I will be opening my own studio and shop soon.
Despite these advantages, I, like everyone, have had my fair share of adversities. The social isolation, the paralyzing anxiety, the low self-esteem, the uncomfortable awkwardness, the constant disappointing struggle to be someone I’m not …
The struggles I have endured might seem difficult for most people to understand, although I could be wrong about that – it could be that more people have struggled the way I have and I just don’t realize it. Considering that I’ve always felt alone on an deserted island, though, I tend to doubt that theory, which is why I write about my experiences now. I’m not aiming to make anyone feel sorry for me or saddle anyone with guilt. I write because I’m finally at the point in my life where I am able to do so openly and without regret, and in doing so, I hope to help others better understand what people like me go through.
My life’s struggles have all led up to this point and, hopefully, will have some sort of impact on my audience and inspire others in any way they possibly can, however small that might be.
Blackbird singing in the dead of night Take these broken wings and learn to fly All your life You were only waiting for this moment to arise
I’m no Paul McCartney, but I have finally learned to fly.
As always, thank you for reading. Here’s to a new decade, new possibilities, and better understanding of ourselves and others.
“Boy, the holidays are rough. Every year I just try to get from the day before Thanksgiving to the day after New Year’s.“
~ Billy Crystal’s character Harry Burns in When Harry Met Sally (1989)
It seems the older I get, the less enjoyable I find each succeeding holiday season. As a child I was as excited about the holidays as any other kid. Who wouldn’t look forward to time off from school, heaps of presents, and – hopefully – piles of snow to play in? Having a December birthday like I do is an added bonus.
I used to love wrapping presents, decorating them with elaborate ribbons and bows. The color schemes had to match and the gift labels had to be in just the right spot. It almost seemed like a shame to unwrap the gifts and destroy my works of art. Yeah, not so much any more. Now I’m lucky just to get the paper slapped on the presents before Christmas morning.
I used to love putting up the tree and decorating the house in lights. These days, I don’t even get excited about that and have gotten to the point of not wanting any decorations at all. “Honestly, do we really need to put up the Christmas tree?” I think to myself every year.
Part of the reason, I’m sure, is the added responsibilities of being an adult and parent. The shopping, the planning, the cooking, the baking, the wrapping, the decorating, the traveling, the packing, the expectations …
But for me there’s more to it than just these things. It’s the noise.
I’ve always been a quiet person, but I don’t recall the noise being so bothersome to me when I was younger. As the years go by, I’ve noticed that my threshold for tolerating noise gets lower and lower. Maybe this isn’t unusual. Don’t most adults get a bit irritated by noisy children or loud music, for example?
This noise aversion of mine applies to every-day life as well. I’ve gotten to the point where I wear earplugs as much as I possibly can. Unless there’s something I specifically want to listen to or hear, I wear earplugs almost constantly around the house. I’ll even sneak them into my ears in public whenever possible. (One of the benefits of having long hair.)
Recent MRI studies have found that children diagnosed with autism spectrum disorder have brains that are hyperconnected compared to typical (non-autistic) children. In other words, their brains have more neurons connecting different portions of their brains than typical children. The studies also found that the more connectedness a child has, the more severe their symptoms are. The picture below shows side views of the brain of a typical child on the left. On the right are side views of an autistic child’s brain.
In many ways, it seems to me that I feel and sense things more acutely than most people. Noises that don’t bother other people are too loud for me. I’m constantly telling people to turn down the volume. I don’t like going to the movie theater because the volume is so loud. Action movies are intolerable for me. I can’t even be in the same room when one’s playing, I have to go hide upstairs and put in my earplugs or use my noise-cancelling headphones. Many people on the spectrum rely on their noise-cancelling headphones in order to function in noisy situations.
This applies to other senses as well besides hearing. Most of the time I don’t like people touching me, except my kids. Certain smells and tastes that other people don’t seem to mind I find overpowering. I almost always have to wear sunglasses when I’m outside, even on a cloudy day because the light is too bright.
A lot of activity in a social setting seems fine to other people, but is usually overwhelming for me. Most people seem to long for socialization with others, but I usually don’t, at least not in large doses anyway. I can handle an hour or two of socializing at most, even with people I know well and enjoy being around, but then I have to remove myself or I will become overwhelmed and shut down.
If you don’t know what I mean by “shutting down”, imagine a pot filled to the brim with water that’s constantly simmering. Turning up the heat enough will cause the water to eventually reach the boiling point. If you don’t reduce the heat in time, the water will spill over the sides of the pot.
When I experience enough sensory input to cause me to boil over, I will shut down. During these episodes, I literally feel like something is building up inside of me. When I go beyond the boiling point, I can’t talk or tell anyone what’s wrong. I have to go be by myself until I calm down, which sometimes takes an hour or two.
This is one way that people on the spectrum respond to sensory overload. Others have meltdowns, which I will discuss at a later time. While I would imagine that most people feel overwhelmed or stressed from time to time, it seems the way a neurotypical (normal) person’s body reacts to it is different and not so severe.
So when I’m trapped in someone else’s house filled with people all talking at the same time and children playing and music and football games on TV and there’s nowhere for me to take refuge just to keep from shutting down … it just becomes too much for me. A few years ago during a very similar situation, I ended up sitting in the car until it was time to go home.
I know how odd my behavior appears to people who don’t understand what I’m going through, and I do try to tolerate as much as I possibly can before things go beyond the point of no return. I promise I’m not trying to be a rude guest – I’m just trying to get through the day, yet I inevitably find myself stuck in the awkward position between other people’s expectations of how I should behave at gatherings and what I am able to physically and mentally tolerate. This no-win situation is sure to bring out my inner Grinch.
“No matter how different a Who may appear, he’s always welcome with holiday cheer.”
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.
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.
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.”
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.
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.
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.
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.
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.