“Teen shot by police”

I was at the gym one morning, sweating my heart out on the elliptical when the above headline appeared on a nearby TV screen. At the time I was listening to a podcast about Cheng I Sao, the most successful pirate in history who also happened to be a woman, so I couldn’t hear what the newscaster was saying, but I didn’t need to hear it. I already knew what it was about.

Through social media, I had learned of Linden Cameron, a 13-year-old autistic boy from Utah who was shot multiple times by a police officer this past September after his mother called 911 to request assistance getting her son to the hospital while he was having a breakdown.

Sometimes events like this hit too close to home and I can’t bear to know the details, but this time I couldn’t look away. After all, I also have an autistic son his age and, if something like this ever happened to him, I would want people to know the details. Now, as I watched images of Linden as a young, happy boy with his family scroll across the screen, I vowed to do more research about his story when I got home.

During the 911 call, the boy’s mother had requested a mental health worker to help calm the situation. Instead, four armed police officers arrived. She warned the responding officers that her son is afraid of police because her own father had been shot and killed by law enforcement earlier this year.

Here is the news clip that I saw that morning at the gym, which includes body camera footage of the incident. Before you view it, I have to warn you that the following video is graphic and might be distressing to watch.

Audio and video from the body camera footage show the officer repeatedly yelling at Cameron to get on the ground and to “knock it off,” to which Linden doesn’t respond. Background noise seems to indicate that at least one other office was also shouting instructions at him. The primary officer then opens fire. After being shot, Linden says he doesn’t feel good and asks the officer to tell his mother that he loves her.

As someone who has a lot of firsthand experience with autism, the first thing I immediately thought was that yelling at the boy was unlikely to be of any benefit in this situation, especially if there are multiple people doing so. I’m loathe to admit that I have yelled at my son in the past out of frustration in the hope of getting through to him. Not once did this tactic ever do any good. My yelling would cause him to shutdown to the point of being completely unresponsive. He wouldn’t talk to me, look at me, or even shake or nod his head to show that he understood. It became like trying to communicate with a brick wall. And, as the parent, I would feel nothing but guilt afterwards. Once I learned that the best thing to do was to give him space and talk to him calmly when he was ready to do so, the outcome was a night-and-day difference for all involved.

The second thing I noticed from watching the video of Cameron was that it was clear to me that he didn’t understand the situation nor did he understand what might happen to him if he didn’t follow the officers’ directions. After being shot, he said, “I don’t feel good.” I’m not sure he realized that he had, in fact, been shot, or that he might be shot a consequence of not following orders. He didn’t say, “You shot me!” or “Don’t shoot!” or something similar. His reaction was more like something you might say when you have a stomach ache. And then he said, “Tell my mom I love her.” *ugh*

There was some discussion beforehand about Linden having access to a gun, which understandably made the officers uneasy, although the video didn’t appear to show him holding a weapon. Granted, it was dark and likely difficult to tell whether or not Linden was armed. It’s also unclear whether or not his mother had explained to the officers that he is autistic.

In this particular situation, law enforcement is required to complete forty hours of training in dealing with mental health situations. Because it is not a mental disability, it seems unlikely to me that autism would be included in such training, although that’s just speculation on my part and I don’t know how much experience these officers have with autism. There are indeed a lot of unknowns in this situation.

According to research by the Children’s Hospital of Philadelphia, people with disabilities – including those on the autism spectrum – are disproportionately injured in interactions with the police and are five times more likely to be incarcerated than people in the general population. One in five teenagers with autism has been stopped and questioned by police by the time they turn 21.

Perhaps you can’t bear to watch an incident like Linden’s. Or, conversely, maybe you’re unaffected by it. After all, this involves people you don’t know and will never meet, and it doesn’t alter your day-to-day existence in any way. Or you might be able to watch this and be bothered by it at the moment, but are able to forget about it tomorrow. Consider yourself very fortunate.

I hope you realize that, although a situation such as this might not impact you, there are a lot of people who are affected by this. Linden is affected by this. I am affected by this. My son is affected by this. Our entire family is affected by this. It’s estimated that one in every 54 people is autistic, which means there are roughly 130 million people worldwide who are affected by this, not to mention the families and loved ones of those individuals. We might one day find ourselves in a similar situation and don’t have the luxury of turning off the TV because it makes us uncomfortable.

Consider the case of Courtney Topic. And Eyad Hallaq. And Charles Kinsey, caretaker of Arnoldo Rios Soto. And a 7-year-old boy identified by the initials LG. And 10-year-old J. Torres. And Oscar Guzman. And this 14-year-old boy in Topeka. And another teenage boy in Fresno who was handcuffed by police after his mother called 911 for paramedics because he was having seizures. And Michael Moore. And Connor Leibel. And 10-year-old Seraph Jones. And Sergei Hall.

All of the people I just mentioned are autistic and experienced an incident of excessive police force, some of which were fatal. The officers involved did not understand or recognize the symptoms of autism and behaviors of those on the autism spectrum.

Sergei Hall was tackled by a police officer and then arrested for evading police after someone witnessed him flailing his arms and yelling while waiting to cross the street at a busy intersection. Someone familiar with autism would likely have recognized his seemingly odd behavior as a clear symptom of autism. After the incident, Sergei tearfully said, “I wish more people understood me.”

I’m not writing this to blame law enforcement for misunderstanding a situation. Police officers have difficult jobs and have to make split-second decisions about potentially life-threatening situations where they often don’t have all the necessary information to make a sound judgement. But the entire purpose of my blog is to raise awareness of autism and create a better understanding of autism – from the general citizenry as well as from law enforcement.

After all, we can’t effectively deal with what we don’t understand.

A day in the life

It was a beautiful summer day – sunny with a high of about 75 degrees – a perfect day to take my three kids to a nearby amusement park.

My oldest daughter is an adventure-seeker who loves everything about amusement parks. No roller coaster is too thrilling, no ride is too extreme as far as she’s concerned. She had first visited this particular park while attending summer camp a few years before and frequently begged to return.

My youngest daughter was only five years old at the time, but there were rides for younger kids that she could enjoy, even if she couldn’t ride everything like her older siblings.

That leaves us with my eleven-year-old autistic son. I was worried he would have a hard time at an amusement park. Too many people, too much sensory stimulation, too much everything. Yet, at the same time, I longed for him to be able to enjoy this place that is tailor-made for children, a veritable heaven on earth.

There are so many things he misses out on because of his autism. He doesn’t spend his free time with peers. He doesn’t leave the house very often, except to go to school. He doesn’t play sports or music. He doesn’t go to the swimming pool or ride his bike in the summer. He doesn’t enjoy trick-or-treating on Halloween or watching fireworks on Independence Day. He doesn’t enjoy parades or concerts or birthday parties or sporting events or school assemblies or pep rallies or really anything where a lot of people are gathered or there might be loud noises.

All I hoped for was for him to be able to enjoy an amusement park like any other kid. I knew there was a possibility that things would not go well that day, but I tried to remain optimistic, so I nervously hoped for the best as we jumped in the car and set out for the day.

On one of our good days, my son made a beautiful new friend.

The admission fee for all four of us to enter the park totaled $175. As I paid for our admission, I secretly hoped this would be money well spent.

We decided the Ferris wheel would be the best way to ease into things. Although the ride was smooth, I can’t say it went smoothly. My son didn’t enjoy being that high up in the air, and felt uncomfortable with the car swaying back and forth when the ride stopped to let other riders on and off.

Nearby there was a ride that flipped its occupants upside down and suspended them for several seconds at a time. His older sister had ridden this before and was excited to take him on it. As I watched them being flipped upside down at high speeds, I could see the terror growing on his face. He survived the ride, but was clearly upset by it.

Next we all tried a ride that looked fairly harmless. This one wouldn’t turn us upside down, but there was so much centrifugal force involved that it was almost impossible not to slam into the person sitting next to you. None of us enjoyed this ride except my oldest daughter.

The bumper cars were nearby, so we headed over to take a little break from the thrill rides. It seemed tame enough. Little did I know that this would be the beginning of the end of our adventure that day. The two girls rode in a car together with the oldest steering. My son got his own car, but quickly became frustrated by people running into him and not being able to get the car to respond the way he wanted. While other cars whizzed by, he stood up, climbed out of his car, and walked off the floor in frustration. I managed to keep him from storming off through the park while we waited for his sisters to finish. In the meantime, he kicked over a large garbage can that hit a man standing nearby. Mortified, I apologized profusely.

He was able to calm down enough as we walked over to the least dangerous-looking roller coaster. It was a wooden one with no big drops or upside-down loops. We all stood in line together, but when it was our turn to climb into the cars, my son decided he didn’t want to ride after all. My oldest daughter ended up riding by herself while the rest of us stood near the exit and waited for the ride to finish.

As we stood there waiting, we saw a guy walk by with a gigantic stuffed black panther, which he had won by playing one of the carnival games. Before we go any further, understand that my son was obsessed with black panthers at this point in his life.

He begged to play for a chance to win the big black feline. In order to win the prize, he had three tries to knock down a stack of bottles with a bean bag. The first try was a swing and a miss – strike one. Second try, strike two. Third try, and he was out. Literally. Cue the meltdown of all meltdowns, which had been building all day, but this was the proverbial straw that broke the camel’s back.

In a state of distress, he took off running and I entered panic mode. One child was running away from me as fast as he could, one was somewhere hurtling through the air on a roller coaster with no idea of what was happening down on terra firma, and the third was too young to stay anywhere by herself, least of all an amusement park.

I don’t know how many people witnessed this episode and I stopped caring what those who did thought. No one that I noticed stopped to stare or comment on what must have appeared to be strange behavior. Regardless, other people were the least of my worries. I was solely focused on keeping all my children safe and in one location.

Thankfully the roller coaster ended and my oldest daughter found us in time for me to tell her to stay with her younger sister while I chased down their brother.

He was heading for the parking lot, which would do him no good because our car was locked and I had the keys. And we couldn’t just leave his sisters there in the park. How would it be fair to them to leave so early when they had barely had a chance to experience it? What about all that money I had spent to get into the park? I had to stop him before he passed through the gates.

Somehow I managed to catch up with him, which made him even more unhappy. Whichever direction I was going, he went in the opposite direction. Fortunately I had a slight size advantage and was finally able to restrain him. I wrapped my arms around him and squeezed.

While the outside observer might think that I was simply trying to keep him from running off again, this maneuver was more than that. During a previous meltdown he had experienced several months earlier, I had learned that he responded well to what’s called deep pressure. Many autistic people find it helpful for someone they know and trust to intervene by squeezing or hugging them firmly when they are feeling overwhelmed, overloaded, or extremely anxious. This pressure has a way of restoring order and providing reassurance, which helps them calm down more quickly. Those who don’t like to be touched can find relief from compression vests or weighted blankets.

When she was a teenager, world-famous autistic Temple Grandin observed that agitated cattle were calmed by squeeze chutes. Although she craved hugs from other people, sensory issues made them intolerable for her. As a result, she invented a “hug machine” for herself in order to imitate the same calming effect when she herself felt overwhelmed and anxious. And so deep pressure therapy was born.

Left – cattle squeeze chute.
Right – In the eponymous biopic, Claire Danes portrays Temple Grandin in the hug machine she invented.

After several minutes of applying deep pressure, my son was finally able to calm down. We were both exhausted – physically and emotionally – and knew that our day at the amusement park was over. While the girls were rightfully disappointed, they understand all too well that things like this happen in the world of autism. I held it together during our solemn car ride, but had the ugliest of all ugly cries after we arrived home.

The worst part of all this? Admitting to myself that, no matter how much I try, my son will never experience life in this world like a normal person. That’s a hard pill for a parent to swallow. And fear of the future – what if something like this happens to him when he’s a fully-grown man? I was able to overpower him that day two years ago, but today he’s already taller and stronger than me. The odds of me being able to restrain him by myself now are quite low.

Day-to-day life is often a roller coaster when you live with autism. Most of the time, we are able to just sit back and enjoy the ride, but then then the ride operator flips a switch and suddenly we’re hurtling head-first toward the ground at break-neck speed and everything is turned completely upside-down.

Just like a ride we don’t enjoy, our family has learned to get through it and be grateful when the ride comes to a complete stop. And, thanks to my son, I am appreciative that I don’t have to ride any more real roller coasters.

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A particular problem

There’s something you should know about me, and I’m afraid it’s bad. Really bad.

*deep breath* OK, here goes nothing …..

… I’m a picky eater. There, I said it. No one likes a picky eater, after all, right?

Have you ever taken one of those online quizzes to determine whether or not you’re a picky eater? I don’t have to take a quiz to know that I am one, but I posted the following list of various foods and drinks on my Facebook page once and asked people how many of these items they wouldn’t dare consume. Most said none or maybe one. And me? 41! Unfortunately, like golf, having a high score in this situation is not a badge of honor. Believe it or not, if I had taken this quiz as a child the score would have been even higher. In that case, I would have added garlic, lettuce, broccoli, spinach, mayonnaise, soy sauce, tomatoes, mushrooms, and oranges to the list. (See? It could always be worse.)

Xes are bad

I’ve always been acutely aware that bearing the ‘picky’ label is not something of which to be proud. Much to my chagrin, my highly discerning palate has always seemed to cause others nothing but problems. I know it created grief for my parents when I wouldn’t eat certain things as a child, and I can understand their concern for my nutritional welfare.

This unfortunate characteristic of mine has other adverse side effects as well. As a guest at someone else’s table, I will shamefully pass the bowl of peas, hoping they won’t notice that I didn’t put a spoonful on my plate. Of course, no one outside of my family could possibly know of my extreme choosiness beforehand, and I always feel guilty in case the host thinks I’m insulting their cooking. And sometimes it can be a real challenge to find something on a restaurant menu that I can stomach.

So why don’t I just suck it up and take a bite of those peas, just to appease everyone and avoid any awkwardness and hurt feelings? The reason is simple to state but likely difficult for others to understand.

The reason is because I can’t. No doubt you’re reading this and thinking, “What’s the big deal? Just eat it already, it’s not that difficult!” Let me try to explain.

The biggest problem for me is my heightened sensory awareness, which is very common for people on the spectrum. Certain smells and tastes are so strong they overwhelm me. Additionally, I’m very sensitive to textures and the way certain foods feel in my mouth.

Two of my eternal gustatory nemeses are coffee and onions. I have always hated the smell of coffee. I used to have a piano teacher who kept a pot of coffee on all day long. By the time I showed up for my lesson in the late afternoon, the coffee would be burnt, but she still drank it anyway. During my lessons she would lean in close to me and exhale that awful aroma directly in my face. It’s a miracle I never vomited all over her piano. After that trauma, you couldn’t pay me all the money in the world to drink coffee.

And then there’s onions. Not only do I not like the way they taste, but the worst part for me is the crunch when I bite into one, regardless of how minutely it has been diced. There’s hardly anything I can tolerate less when it comes to food than to be blissfully enjoying a delicious dish only to suddenly bite into a crunchy onion when I least expect it. All appeal is suddenly lost.

I used to love Cap’n Crunch cereal as a kid, but I couldn’t eat a single bite until each piece had soaked up enough milk to turn the whole bowl soggy. Ironically, I didn’t like crunchy Cap’n Crunch. If you were alive in the 1980s, you might remember the commercials where Cap’n Crunch battles his enemies, the Soggies. Well, I for one was rooting for the Soggies. To this day I let my Quaker Oatmeal Squares and Cracklin’ Oat Bran soak in milk for a good twenty minutes before I partake.

Cap’n Crunch vs. the Soggies (1986 commercial)

Another part of the issue is that autistic people need routine and familiarity. Often people on the spectrum eat the same foods over and over and become distressed and anxious when something unexpected intrudes on their routine. (I’ve previously written about why rituals and routines are so vitally important to people on the spectrum. Refer to my posts titled Oh, the noise, noise, noise, NOISE!, Sigh of relief, and The price of a gallon of milk for more in-depth information on this topic.)

In his best-selling work titled Neurotribes: The Legacy of Autism and the Future of Neurodiversity, author Steve Silberman chronicles the story of Leo Rosa, an eleven-year-old autistic boy whose particular idiosyncrasies include a diet consisting of only “peanut butter and jelly sandwiches, bananas, guacamole, Goldfish crackers, and Veggie Booty popcorn snacks.” After reading books written by parents of autistic children and consulting with alternative therapists, Leo’s parents placed him on a gluten-free casein-free (GFCF) diet in an effort to “cure” his autism. Instead of improving his situation, however, completely upending Leo’s routine made him miserable and caused him significant regression.

I could write at length about various foods and why I can’t tolerate them, but hopefully you get the idea. The main point I hope you take away from this is that I don’t believe anyone who is overly choosy about which foods and drinks they consume actually chooses to be the way they are. We don’t just decide one day that we won’t eat this or that. It’s not a switch we can turn on and off whenever we wish. I guarantee you that we picky eaters would not choose to be this way if we could help it.

We are not trying to be difficult or insulting or cause problems. We’re just trying to find enough to eat to satisfy our hunger and get through a meal without anyone’s feelings getting hurt, including our own.

So please try not to take offense when I decline your cup of coffee. Although I have become less selective over the years, I doubt that I will ever overcome that particular hurdle. And I am more than OK with that. I hope you will be, too.

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Work on the spectrum

“What do you want to be when you grow up?”

I didn’t have the vaguest answer to that question until I was 35 years old, well past the age a grown-up is supposed to know. How I came to dread that question in the meantime and how envious I was of people who seemed to have their futures and purposes figured out.

Ideas came and went through the years, none of which lingered long. The first job that caught my interest was being an airplane washer, which I saw depicted in a Richard Scarry book at a very young age. Then I dreamed of becoming a baseball player. After that there were a few teachers I admired in elementary school, so I naturally thought that maybe I should become a teacher, too, but soon realized that I wasn’t cut out to be in charge of a classroom.

For many years afterwards, nothing seemed to catch my interest as a possible career that I was willing to commit to for life. Despite all those years of uncertainty, there was one thing I did know for sure – I knew that I was not meant to have a conventional occupation.

The problem wasn’t that there was nothing at which I excelled. The problem was that I didn’t know how to translate the things I enjoyed into a profitable career that also suited my abilities and idiosyncrasies. The arts and humanities have always held my passion – music, foreign languages, history, literature – and guess which road all of those areas point toward. That’s right – the aforementioned teaching career that I’ve known all along wasn’t right for me.

On top of that, none of the typical career paths piqued my interest. Doctor, lawyer, nurse, accountant, realtor, salesperson, scientist, computer software developer, etc. … Many people are well-suited for these types of careers and we absolutely need people to do these jobs, but I am not one of those people.

The first time I visited with an academic adviser as a college freshman, she asked me my purpose for attending college, to which I responded that I wanted to acquire knowledge. I had always viewed education as a means to broaden my mind and learn more about the world. It seemed unnatural to me to use education simply as a way to become trained to perform a particular job. As a result, I viewed college as an extension of high school, just with more advanced subject matter. After floundering around aimlessly in college for five years and bouncing from one area of study to another, I did finally manage to graduate with honors with a liberal arts degree.

Fortunately I stumbled upon an opportunity one day during finals week before graduation. Two VA employees had a table set up in a remote corner of the student union. They were looking to hire outstanding scholars who had high GPAs, regardless of major. And the next thing I knew, I was an employee of the federal government.

I spent ten years working on disability claims in a variety of roles, some of which suited me better than others. After the birth of my second child, I returned to work as usual, but inevitably resigned when it became clear that my son – who was later diagnosed as autistic – needed me and the stability of our home environment rather than the unpredictability of day care.

Child number three eventually came along a few years later, so I spent the intervening time as a stay-at-home mom until she was old enough to attend school. In the back of my mind, I knew that I would need to re-enter the workforce when that time came. I also knew I didn’t want to go back to working for the government. While the compensation, benefits, and regular hours were great, I just couldn’t see myself spending the remainder of my working years in a position that didn’t spark my passion or creativity.

While I was pregnant that last time, I had the opportunity to acquire an amazing grand piano for a ridiculously low price. I could tell it was a quality instrument, but that it also needed some work. In the end, it was an offer that was too good to resist. The mover recommended someone he knew that could fix the piano’s issues, and the gentleman came over and proceeded to take the piano apart, piece by piece. I watched in fascination as he worked and suddenly a light bulb went on in my head.

“Wait a minute,” I thought, “you mean people actually get paid to do this?”

My 1924 Haddorff grand, the inspiration for my career as a piano technician.

I knew there were people who tuned pianos, but had never met or even seen one of these rare, elusive creatures until then. It certainly never occurred to me that it could possibly be a career. Furthermore, I envisioned all piano tuners as elderly men. Surely this wasn’t a suitable occupation for a young woman!

I had learned to play on a fabulous vintage upright that was made around the turn of the 20th century by a long-forgotten piano manufacturer. My parents bought it from friends of theirs for $25. During all my years at home, it was never tuned or repaired to my knowledge. As a teenager, I was struck by an inspiration to restore that piano one day as a hobby, but I tucked that idea deep in the back of my mind.

Me around age 12, playing our vintage upright manufactured by the
Early Piano Company in Fort Dodge, IA

As my youngest child grew older, I started seriously thinking about piano work as a possibility, although I still had some doubts. I knew how to play piano, of course, but actually working on the instrument was uncharted territory for me. I would have to learn something completely new from scratch and build a business all by myself. I’m not a sociable, outgoing person – how in the world would I be able to conduct a successful business?

The decisive moment arrived one wintry day when my eldest daughter and I were chipping ice from our sidewalks. She made a comment indicating that the males in our family should be the ones doing this difficult job, not we poor females. As soon as she said that, I made my mind up then and there that I was going to pursue this crazy dream of mine to become a piano technician. I wanted to show her that a woman can do anything she wants, and that she could envision herself in a role traditionally held by a man if that is her heart’s desire. For the sake of myself and my children, I wasn’t going to let my self-doubts hold me back any longer.

So I enrolled in various home-study and in-person classes, courses, and seminars to learn how to work on all aspects of pianos, from tuning to repairs to restoration. I was almost always the only woman in these classes and usually the youngest by far, although it seems the tide is shifting on this male-dominated field as more women of all ages are entering the profession. It has taken some time and a lot of hard work to gradually build my business, but I am so fortunate to have finally found my purpose and passion.

Aside from being around pianos and music all day, one of the things I love most about my profession is that I get to work mostly by myself. I listen only to what the instrument is saying to me while I work on it. When I’m not doing that, I happily spend hours in my shop focused solely on whatever job needs to be done. I never get lonely or bored working by myself. I do have to talk to clients in person or on the phone, which is the hardest part for me, but even that has gotten easier with time and experience.

Much to my surprise, I also became a teacher! Well, sort of. While still a stay-at-home mom, I began teaching private music lessons as a means to supplement our household income. I have discovered that working with students individually is something I really enjoy and find very rewarding. I’m also extremely fortunate to work as a paid accompanist in our local schools. I don’t have to be in charge of a classroom; all I have to do is show up and play!

I am one of the lucky ones. Obtaining and maintaining gainful employment is difficult for many people, but is especially challenging for those with ASD due to their unique communication and social impairments. The vast majority – between 50 and 75 percent – of working-age adults on the autism spectrum are unemployed or underemployed.

Even before employment begins, navigating and mastering the application and interview process is problematic. Of the many hindrances autism can cause with employment, by far the most common obstacles are communication and social difficulties with supervisors and co-workers, which often lead to termination. Those who are employed report high levels of stress and anxiety due to many factors, such as trying to fit in socially with co-workers, sensitivity to workplace noise and stimuli, and fear of the unknown, to name a few.

Vocational rehabilitation has not been found to be successful for most on the spectrum. Instead, many benefit from on-the-job support services, such as appropriate job placement, a supportive environment from supervisors and co-workers, on-the-job training, workplace modifications, and long-term support.

By far the most important factor in an autistic employee’s success is how receptive and knowledgeable the employers and co-workers are of autism. Not only does the autistic employee benefit exponentially from others knowing more about autism, but the end result is an environment where everyone in the workplace is more successful.

Thankfully more and more people are learning about autism than ever before. In the meantime, I will continue to share my experiences with autism and revel in my good fortune and ability to work by myself on my own time. If you need me, I’ll be in my shop.

The price of a gallon of milk

I don’t typically make New Year’s resolutions. Why wait until a new year rolls around when you can make a change right now? That’s my usual logic, although I do occasionally stop and think about things I’d like to change when the calendar flips over to a new year.

One change that I decided to make at the beginning of last year was to try to reduce the amount of plastic our family consumes. This is an ongoing challenge because just about everything available for purchase at our local grocery stores comes in some sort of plastic container or wrapping.

We do recycle as much as possible, but learning the dismal amount of how much plastic actually gets recycled (only about 9%!) inspired me to try to reduce our plastic consumption in addition to recycling.

I was excited to find that some brands still sell milk in paper cartons rather than plastic jugs. Remember the milk cartons at school lunch? This was perfect, I thought! Our family of five goes through a lot of milk. It’s slightly more expensive to buy milk in half-gallon cartons than gallon plastic jugs, but I thought it would be worth it to do my part in helping the planet.

It turns out that not everyone in the house was as excited about my solution as I was. Well, really just one person was less than thrilled that I was no longer buying the same kind of milk as before – my 12-year-old son was not a fan.

My son enjoys a reflective moment at the Biltmore

In case you’re not aware, he is also on the autism spectrum. In fact, it was because of his diagnosis that my own was also discovered. He displays a lot more classic symptoms of autism than I do. In this case, strict adherence to routines and distress when those routines become disrupted would be on full display.

So what’s the big deal? It’s just a different kind of milk! To most people, that’s true – it is just milk. But to someone on the spectrum, it’s so much more than that. People on the spectrum rely on certain routines and things remaining the same because the certainty and familiarity helps them find calm and comfort in a world that is anything but calm and comfortable for them. When things change and their routines are disrupted, autistic people can experience significant distress and lose control of their emotions.

The first morning with the new milk was a school morning. Like every morning, I dumped his favorite cereal into a red bowl – he won’t eat out of a yellow bowl – and poured this similar yet unfamiliar white substance on top.

After one bite, he looked at me, perplexed, and asked, “What’s this?”

“Your cereal,” I responded.

“No, it’s not. This milk tastes funny.”

“I’m trying something new. Instead of buying the milk we usually drink, I got a different kind that comes in cartons so that we don’t use as much plastic. It’s better for the environment!”

I knew it was possible that he wouldn’t react well to this change, but I still held out hope that that wouldn’t happen. Sometimes he surprises me by tolerating change better than I would expect. But not this time. This time he had a meltdown.

Those who are unfamiliar with autistic meltdowns are likely to assume that someone experiencing one is just having a temper tantrum. In fact, for many years before we discovered his autism, we naively assumed that it was misbehavior on his part and that, like most children, he would eventually grow out of it. When his episodes became worse instead of better as he grew older, it started to become clear to us that there was something much more serious going on.

I’ve never taken a video of one of my son’s meltdowns for a few reasons. First of all, there’s so much chaos going on that there’s no time to grab a phone and start recording. Secondly, my instinct is to help him calm down, not document it. He responds well to pressure, so I try to wrap my arms around him and gently squeeze. It’s difficult to do that and record at the same time. And, most importantly, he can’t give his consent to being recorded and I don’t want him to feel like he’s some kind of side-show attraction.

In lieu of having any visual evidence of an episode, the easiest way to describe it in words is that he becomes visibly upset – he will grab his head with his hands, make wild gestures with his arms, and pace erratically. He will also make guttural noises in the back of his throat, clearly evident of distress. Sometimes he will throw or hit nearby inanimate objects. He has never become physically aggressive with us and has no intention of hurting anyone.

Here’s a video someone else made of a typical meltdown that he experiences. Please be aware, though, that a meltdown can be displayed in many different ways – biting, hitting, banging one’s head against a wall, walking in circles, flapping hands, crying out, heavy breathing, etc. Below is just one example of what a meltdown might look like.

Reenactment of one person’s experience during an autistic meltdown

What would you assume if you saw someone behaving in this manner and you didn’t know the person was autistic? Spoiled brat or bad behavior if it were a child? Maybe a mental disorder if it were a teenager or adult?

Before I knew what an autistic meltdown was and why it occurs, I said things to my son and reacted in ways that I’m not proud of. “Why can’t you behave?” “You’re too old to act like this!” I reacted in frustration and punished him because I didn’t know any better. I assumed he was intentionally giving me a hard time when, in reality, he was having a hard time. He needed me to be there for him while he suffered through these episodes, not to chastise him for something he can’t control. It did neither of us any good whatsoever for me to be punitive, admonishing, or judgmental.

One of the best things to happen as the result of his diagnosis is that I handle his meltdowns so much better. Now that I know why these episodes occur and that he’s not misbehaving, I react in a much calmer manner myself. He calms down more quickly when I respond to him in a calm manner.

On that fateful morning, instead of getting angry at him or accusing him of trying to avoid going to school because I simply changed the type of milk we drink, I told him that I would buy him some yogurt that he likes and deliver it to him at school for his breakfast. He was able to calm down and voluntarily go to school, albeit a little late. I called his special education teacher and explained the situation, which she understood completely

So instead of a slight increase in the amount we pay for a different kind of milk, in the world of autism, the abstract cost of this simple switch is much higher. The price we pay at the cash register doesn’t include the cost of the emotional turmoil inflicted on everyone involved. I always have to weigh the options and consider if making a change is worth the inconvenience it might cause. And yet, now that we know and understand more about autism, the cost isn’t as great as it would be if we had no understanding of the situation.

My son still won’t drink the new milk, and that’s OK. Now he likes toast in the mornings instead.

Blackbird

Paul McCartney, singing Blackbird

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.

Oh, the noise, noise, noise, NOISE!

“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.

A clip from How the Grinch Stole Christmas (1966)

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.”

~ Cindy Lou Who, from The Grinch (2000)

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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Sigh of relief

It’s back-to-school time, that time of year when most parents breathe a sigh of relief and look forward to enjoying some peace and quiet, especially those who stay at home with their children during the summer.

I’m sure there are some parents who are a bit sad when summer comes to an end. Summer definitely has its share of pluses – not-so-strict schedules, warm weather, vacations, more time for relaxation … But some of us have other reasons to not look forward to a new school year.

My son at the Petrified Forest National Park on a trip west a few summers ago

While I enjoy the silence as much as anyone – in fact, probably a lot more than most – and I do look forward to having more time to myself to actually try to get something done, sending my children back to school isn’t exactly my favorite time of the year, and it’s not just because I don’t get to sleep late on school mornings.

For many people on the autism spectrum, changes to daily routines can create a lot of problems. The reason for this is because daily life is a constant barrage of unknowns, so those on the spectrum rely on strict routines, habits, and schedules to provide themselves something known and familiar in order to find some calm and comfort in a strange, noisy, sensory-filled world. Surprises, chaos, and uncertainty are not easily tolerated by autistic people.

As Theresa Jolliffe explains, “Reality to an autistic person is a confusing, interacting mass of events, people, places, sounds, and sights. There seems to be no clear boundaries, order, or meaning to anything. A large part of my life is spent trying to work out the patterns behind everything. Set routines, times, particular routes, and rituals all help to get order into an unbearably chaotic life. Trying to keep everything the same reduces some of the terrible fear.”

I briefly mentioned before in my Autism 101 post how one of the defining characteristics for a diagnosis of autism is that a person must insist on things remaining the same, have inflexible adherence to routines, or have ritualized patterns, but I can’t overstate how important patterns and routines are and how much chaos can be caused when one of these is disrupted.

In my son’s case, the end result is usually a meltdown of varying intensity, where he becomes completely uncommunicative and essentially stops functioning. Often times he loses all self-control and takes out his frustrations on anything he can get his hands on. These episodes can last anywhere from 20 or 30 minutes to several hours, depending on how severe they are. I have come to dread any change in routine that might set off an avalanche.

My son started junior high a few weeks ago. New building, new schedule, new teachers, new classrooms, new locker combination, new everything – the perfect recipe for a potential storm. He didn’t outwardly appear to be too anxious about starting junior high, but I know I had enough anxiety about it for the both of us.

Before the school year started, I emailed all of his new teachers, explaining that he’s autistic and that it might take awhile for him to adjust to his new environment. Without knowing this, others could easily assume that he’s giving them a hard time when, in reality, he’s the one having a hard time when problems arise.

We also were able to meet most of his teachers and tour the school at orientation before the first day of classes. And, most importantly, we met his new special education teacher and discussed ways to help the transition go more smoothly.

After the second week of school, I received the following email from one of his teachers.

School. Year. Made.

Words aren’t adequate to describe how much it meant to receive this short message. It’s easy to get discouraged when someone you love more than anything in the world has to navigate so many challenges every day and you know that life will never be easy for them. You don’t ever know whether others will be able to see through all of the issues and understand who your loved one really is and just how special they are.

Don’t get me wrong – there have been some issues even in these few short weeks and I’ve spent quite a bit of time on the phone with people at school discussing strategies and ways to help both him and them. The transition hasn’t been completely smooth-sailing, but it has definitely gone better than I had feared it would.

And now it’s my turn to finally breathe a sigh of relief. At least for today.

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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.