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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Say anything

“I gave her my heart, she gave me a pen.”

~ Lloyd Dobler, played by John Cusack in Say Anything (1989)

Iconic boombox serenade from Say Anything

When someone asked me in the past what my favorite movie was, I struggled to come up with an answer. There have been a few movies that I watched repeatedly and, in doing so, memorized their dialogue, such as When Harry Met Sally, Dirty Dancing, and the original film version of The Music Man, but it wasn’t until I watched Cameron Crowe’s 1989 classic Say Anything a few years ago that I knew I had finally found my movie.

I had just seen Gross Pointe Blank and really enjoyed John Cusack’s performance as assassin Martin Blank, so I went searching for other movies of his. In Say Anything, Cusack plays the role of recent high-school graduate Lloyd Dobler, a lovable but directionless guy struggling to figure out his future when he falls for valedictorian Diane Court, played by Ione Skye. Lloyd is just an adorably awkward, genuinely nice guy who is completely taken by the girl he adores. How can you not love him?

Meanwhile, Diane’s father, played by veteran actor John Mahoney, is in trouble with the IRS for fleecing money from his nursing home residents. Here’s how the scene plays out when Jim Court confronts Diane after she stays out all night with Lloyd.

Jim Court: “You can say anything to me, I hope you still know that.”

Diane: “I know that … I spent the night with him.”

Jim: “Lloyd?”

Diane: “Dad, yes. And I’m scared to death of what you must think of me right now.”

When I saw this scene, I was immediately struck by Diane’s words. “I’m scared to death of what you must think of me right now,” even after her father has assured her that she can confide in him. I have struggled with the fear of others’ reactions to things I say my entire life. It’s not as paralyzing as it used to be, but I do still wrestle with it more than I’d like to admit.

There are several reasons why I don’t talk much. Sometimes I just can’t. Other times I don’t know the socially acceptable thing to say. Still other times I’m just plain afraid of what people will think of me if I verbalize what’s in my head, because – let’s be honest – a lot of the thoughts floating around in there make sense only to me. I know this because I’ve witnessed people’s reactions to things I say on numerous occasions. Whenever I see that puzzled look on someone’s face and an imaginary question mark pop up above their head, I know that’s my cue to stop talking. Having a normal conversation is something that has always been especially challenging for me.

Let me try to give you an idea of what I mean. During the course of a conversation, someone says something or makes a point that really catches my interest. While the conversation switches to other topics and ideas, I am still stuck on the aforementioned point. As I try to follow the new direction the discussion has taken and simultaneously formulate a response to the previous subject, my thoughts are swimming in every different direction inside my brain and I struggle mightily to come up with something to say that will make sense to the other people in the conversation. While other people’s thoughts seem to move in a straight line from synapse to verbal response, my thoughts take a randomly circuitous route, wandering aimlessly across the far corners of my brain and back again several times over. I usually have to silently repeat something I want to say over and over in my head before I summon enough bravery to say it out loud. Inevitably, I will blurt out something unrelated to the current conversation that might have been a somewhat valid point ten minutes ago but has long since been relevant to the topic at hand. Cue the puzzled expressions.

Additionally, I will often pause or just stop talking mid-sentence because it’s difficult for me to speak and decide what to say at the same time, especially if I have to try to figure out what the other person is thinking or feeling and take that into consideration in my response. Most people seem to require an immediate response, so my hesitancy is surely nothing but strange to them.

When I was in high school, two friends and I once went to hang out with some guys from a neighboring town that I had never met. Before we left, one of my friends said to me, “If you’re coming with us, you can’t not talk.” Given that we had known each other since kindergarten, she was well aware of my idiosyncrasies and struggles with conversation. While the girls went off with their boyfriends to find some privacy, I was left alone in the living room with a total stranger. I didn’t even know his name. We sat in uncomfortable silence for what seemed like an eternity when I finally summoned the courage to ask him why there was a pair of work boots sitting on his coffee table. These boots were just sitting there right in front of me and it was the only thing I could think to say. (Remember, after all, I’d been told I wasn’t allowed to not talk.) He made a short, unremarkable response and neither of us spoke a word after that. Not exactly a riveting discussion.

According to clinical psychologist and Asperger’s expert Tony Attwood, people with Asperger’s often tend to make what others perceive as irrelevant comments or questions. In his book The Complete Guide to Asperger’s Syndrome, Attwood states that these utterances can be caused by impulsivity, the inability to formulate a logical response, and the inability to consider the perspective of others.

During and after these exchanges with people, my self-esteem takes an immediate nosedive as I struggle to deal with others’ judgment and perception of me. It wasn’t until well into adulthood when I realized that I dwell on these events far longer than anyone else.

When I became a parent, I started making a conscious effort to ingrain in my children that they could always say anything because I never wanted them to experience the paralyzing feeling of being afraid to say something, at least to me. They will often ask me, “Can I tell you something?” And I always respond, “Of course, you can tell me anything.” Even when it’s something they know might make me angry, I would rather have them tell me the truth than feel like they can’t tell me. Fortunately, that rarely happens and I’m pretty good at not reacting punitively by flying off the handle. They might still experience that fear, but I hope they at least know that I won’t judge them. What I would have given as a young person to know there was just one person that I could have talked to without judgement or fear of their reaction …

And with that I will leave you with a completely random thought, as I do best.

Kick boxing – sport of the future.

(Hint: it’s from the movie.)

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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.

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Does Autism Speaks Speak for Autistics?

Every April many well-intentioned and caring individuals and organizations look to support autism in any way they can. It’s amazing and wonderful to see more and more people aware of autism and willing to assist than ever before. Invariably, many choose to support Autism Speaks, the largest, most well-funded, and most well-known autism research and advocacy organization in the world.

Autism Speaks was established in 2005 by former General Electric and NBC executive Bob Wright and his wife Suzanne, who were inspired to take action when their grandson Christian was diagnosed with autism. To help launch Autism Speaks, Home Depot co-founder Bernie Marcus donated $25 million.

In spite of its overwhelming presence as the voice of autism to the world, many people on the autism spectrum are adamantly opposed to Autism Speaks and its principles. Each April I see repeated posts in online autism groups denouncing the organization. Why would so many people on the spectrum be opposed to an organization that is devoted to autism?

For starters, while many of the people on the board of directors have been affected by autism, no one on the board is actually autistic, yet being in this position gives them a certain authority to “speak” for autistic people. It would be extremely difficult for someone to accurately represent autism when he or she has no first-hand experience of the world as an autistic person.

Additionally, some are opposed to Autism Speaks’s puzzle piece logo, which is universally accepted as the symbol for autism awareness. This image has been used since 1963 when the National Autism Society in the UK adopted an image of a puzzle piece with a crying child as its logo, which many feel  portrays autism as an enigmatic condition that causes nothing but untold suffering. Autism Speaks originally incorporated a blue puzzle piece as its logo, which perpetuates the notion that autistic people are both difficult to figure out and somehow incomplete, and that autism affects males more than females given its blue color. The organization’s current logo continues to use the puzzle piece but has incorporated more colors than before. Many people on the spectrum reject the puzzle piece logo altogether and prefer an infinity loop portraying a wide range of colors to symbolize the diversity of the autism spectrum.

Perhaps the most vocal opposition to Autism Speaks is that the organization has previously condoned aversion therapy, also known as applied behavior analysis (ABA) therapy, which promotes what many believe are abusive practices in an attempt to reinforce  “proper” behavior.

ABA therapy is the use of techniques and principles to bring about a desired behavioral change. ABA behavior analysts began working with young children with autism and related disorders in the 1960s. In its most basic sense, ABA focuses on increasing positive behaviors and decreasing negative behaviors. For example, a child who has trouble sitting at a desk for extended periods of time and prefers to pace around a classroom is rewarded in some way (e.g., verbal praise or a treat) for staying seated for a predetermined period of time. This might not seem so awful to the average person. What parent hasn’t offered ice cream or a piece of candy to their child if they can just remain quiet for the next 30 minutes? To the autistic person, though, being forced to avoid an activity that brings comfort and helps relieve anxiety is anything but comforting and helpful.

Other types of ABA therapy use more aggressive means to inhibit “undesirable” behavior. Children are slapped, verbally admonished, and even given electrical shocks with cattle prods to discourage what the average person would deem as abnormal, such as engaging in repetitive behavior, preferring to be alone, or avoiding eye contact. Understandably, many adults who were subjected to ABA therapy as children believe that this type of therapy is traumatic and torturous not only because of the harsh and abusive strategies used, but also because it is essentially an effort to train autistic people to act “normally” and does not allow them to be their true selves. ABA therapy that is deemed successful makes the lives of the people who interact with an autistic person easier, but degrades the life of the autistic person. There’s a wealth of information available about the controversy surrounding ABA therapy. Here is a great place to start if you’re interested in learning more about opposition to ABA.

Finally, Autism Speaks’s original mission statement included the sentence, “We are dedicated to funding global biomedical research into the causes, prevention, treatments, and a possible cure for autism.” Regardless of the intention, this statement rubbed a lot of people on the spectrum the wrong way by implying that autism is a disease that needs to be eradicated. Many autistic people don’t want to be “cured” of something that is a fundamental part of who they are, and they understandably became resentful to the organization’s mission. In the past, the organization has also called autism an epidemic disease and labeled autistic people as burdens and tragedies. Unsurprisingly, using this type of language has not endeared Autism Speaks to many autistic people.

There is a growing movement among activist adults who don’t think in terms of curing autism, but focus instead on celebrating the neurodiversity of the wide variety of people on the autism spectrum. Rather than changing autistic people so that they fit into a narrow stripe of acceptable behavior in the world, neurodiversity advocates would like to see the world expand its concept of acceptable behavior to include people with autism.

“The idea of a cure for autism doesn’t make sense. Autism isn’t a disease or an injury; it’s a neurodevelopmental disability that shapes our brains differently,” says Julia Bascom, director of programs for the Autistic Self-Advocacy Network, an advocacy organization run by and for autistic people.

She continues, “If I can’t talk, does it make sense to look for a pill for that, or should my speech therapist help me learn how to type or sign instead? Is flapping my hands or intensely and obsessively loving something ‘weird’ or wanting to be by myself the psychological equivalent of diabetes, or is it a natural and beautiful part of human diversity?”

To give credit where credit is due, current information on the Autism Speaks website states that the organization no longer supports aversion therapy (i.e., ABA therapy) or the notion that vaccines cause autism. However, for many on the spectrum, this change in stance has come too little, too late.

While Autism Speaks’s recent policy changes are a step in the right direction and I applaud the organization for listening to its critics and taking steps to improve itself, it still has a lot of progress to make.  I’m hopeful that it is finally beginning to understand things more from the perspective of autistics. In the meantime, I recommend supporting organizations that have always been focused on neurodiversity acceptance, such as the Autistic Self-Advocacy Network and the Autistic Women’s & Nonbinary Network.

Awareness is great. Acceptance is even better.

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.

Featured

Embracing special education

The first time someone used the term ‘special education’ regarding my son, I was shocked.

At the time, he was in three-year-old preschool, being evaluated by the Area Education Agency (AEA) for social deficiencies. He didn’t show any signs of intellectual or physical disability, he just had a hard time adjusting to changes in his environment and transitioning between different tasks. I wanted to say, “But he doesn’t need special education. He’s not disabled!” (At that time, we had no idea that he was displaying classic symptoms of autism.)

I entered a stage of denial. I thought, “They can call it whatever they want, but it’s not really special education.” At least not the special education I was familiar with, anyway. Let me be honest – there’s a stigma that surrounds special education, one I didn’t want him to have to deal with.

My childhood experiences with special education were minimal at best. The students receiving special education at my school had obvious, severe physical or cognitive disabilities and no interaction with the general student population. Not surprisingly, my perception of special education was extremely limited and misguided.

My son at age three

My son was placed on an Individualized Education Program (IEP) for a few years, then removed from it before he started kindergarten because the evaluators felt he had improved enough to no longer need an IEP. After that, things at school were OK for awhile, not perfect, but he was doing well academically and we assumed that he would eventually grow out of the behavioral problems he was having and develop the skills he needed to help him deal with his issues.

In reality, the issues became worse as he got older. By the time he was in fifth grade, I was getting daily calls or emails from the school about problems he was having. He’d lose a game at recess and refuse to come inside. Or he’d get upset about something and throw a book. He’d miss one question on a test and rip up the paper. Once he became so distraught about getting a flu shot that I had to physically restrain him just so the nurse could get the needle into his arm.

When he was finally diagnosed with autism spectrum disorder in fifth grade at age 11, he was placed back on an IEP, which he has been on ever since and will most likely continue to be on until he graduates. He started receiving special education services and, honestly, I couldn’t be happier about it.

What changed for me? How did I manage such a total 180-degree reversal?

Let’s talk first about what special education is. On a basic level, special education is defined as specially designed instruction tailored to meet the unique needs of a student eligible to receive special education services.

Once upon a time, in a not-so-fairy-tale land, many children with disabilities in the U.S. were prohibited by state law from receiving education in public schools. Children who were blind, deaf, or labeled “emotionally disturbed” or “mentally retarded” were explicitly excluded from attending public schools, and most lived in state institutions where they received little to no educational or rehabilitative services.

Federal legislation in the 1970s extended civil rights to people with disabilities by providing opportunities for them through education, employment, and various other settings. Public schools are now legally required to evaluate disabled children and create an educational plan (i.e., an IEP) with parent input so as to emulate as closely as possible the educational experience of non-disabled students.

Now that my son has a diagnosis and is receiving special education services, just about everything in his life has improved. There are still struggles from time to time, but the good days far outweigh the bad.

His IEP allows him to take breaks when he feels he’s getting overwhelmed. He is able to remove himself from a potentially bad situation and go to the special education room until he calms down. This one concession alone has been so valuable to him, the school, and us. He has so many fewer meltdowns than before, and hardly any disruptive behaviors. He is able to learn better and doesn’t create distractions in the classroom. Phone calls from the school are now few and far between.

And he has been blessed with such amazing special education teachers. Words are inaccurate to describe how valuable these people are. Their job is not easy, and yet they are able to help improve the lives of their students and their students’ families. His middle school special education teacher used to take the time every day after school to write us an email, letting us know how his day was and whether or not there were any issues. And I have to imagine she did that for all her students, not just us.

Flying his octopus kite

Would I rather my son just be a normal kid who didn’t need special education services? That’s a hard question to answer. His autism has many positive characteristics that the world would miss out on if he were just a normal person. As much as I wish he could just be an ordinary kid for his sake, his autistic mind works in beautiful, extraordinary, mysterious ways, ways that I believe will one day be of great benefit to the world.

While autism makes some things more challenging for him, it also makes him such an incredible human being. That is truly a beautiful thing to witness and makes me so proud to be his mom. His autism makes him who he is. And I wouldn’t have him any other way.