I always seem to find myself behind the curve when it comes to pop culture trends. I didn’t start watching The Office until well into its third season. My favorite band, Journey, last toured when I was eight years old; it wasn’t until almost thirty years later that I fell in love with their music. Twenty years after the Gilmore Girls originally aired, I saw my first episode and got hooked.

Similarly, I recently started watching the series Parenthood, which first aired back in 2010. Free time is a luxury I rarely get to enjoy, so spending my time on something had better be well worth my while. I took a chance on the series because it starred Lauren Graham, who also played the beloved Lorelai on Gilmore Girls. In Parenthood, Graham plays the role of Sarah Braverman, one of four adult siblings portrayed on the show. Her nine-year-old nephew, Max, is diagnosed with Asperger’s during the first season.

The character of Max displays many classic symptoms of Asperger’s. He has difficulty making friends. He’s fascinated by insects and happily rattles off obscure facts about the Madagascar hissing cockroach, oblivious to whether anyone’s listening or not. He has trouble making eye contact or answering direct questions. He insists on wearing a pirate costume everywhere he goes. He gets so agitated in class by the sound of the bubbles in the fish tank that he breaks the tank’s glass. When his dad takes him to an amusement park, Max has an epic meltdown and takes off running after learning that his favorite ride is closed for maintenance.

There are times when I feel overcome with surreality, as though I’m watching my life on the screen. Each one of the characteristics I just mentioned is something I’ve dealt with as a parent of a child on the autism spectrum, including the pirate costume, the broken fish tank, and the amusement park meltdown.

Ahoy, matey! My son several years ago in his pirate costume.

Later in the series, Sarah starts working for a middle-aged photographer named Hank played by Ray Romano. Eventually the two develop a romantic relationship and Hank gets to know Sarah’s extended family, including Max. Hank realizes many of Max’s idiosyncrasies in himself and wonders if he has Asperger’s, too. As he learns more, issues Hank has struggled with his entire life begin to make more sense to him – the difficulty with social cues and relationships, trouble communicating, avoiding eye contact, preferring to be alone, etc. He sees a specialist in search of a diagnosis who also helps him understand how to better navigate confusing social interactions.

Had I watched Parenthood when it first aired in 2010, I might have recognized some of Max in my son. Instead, we spent several more years struggling to effectively parent a child whose behavior was difficult to understand and manage as he wasn’t diagnosed until late 2017. I might have realized sooner that my son wasn’t giving me a hard time – he was having a hard time. We might have been able to get professional help and special education resources for him at school at an earlier age. If you wonder why representation in popular culture matters, this is the reason.

Dr. Hans Asperger, the Austrian pediatrician for whom the disorder is named, believed that the “cure” for the most disabling aspects of autism is to be found in understanding teachers, accommodating employers, supportive communities, and parents who have faith in their children’s potential. Fortunately for Max, he has two extraordinarily patient and understanding parents. Of course I know they’re fictional characters portrayed by actors, but their depiction does serve as a good reminder for those of us trying our best to navigate the world of autism.

This parenthood thing – it’s not for the faint of heart, that’s for sure.


La moche americaine

Translation: the ugly American

Me above the rooftops of Lyon, France, 1997

Lyon, France, summer 1997. Seven weeks immersed in French language and culture. It was the chance of a lifetime for a young college student like me! … Or was it?

When I first heard about the seven-week summer immersion program in France, I was excited for the opportunity. I had taken several years of both French and Spanish simultaneously in high school and had a real interest in studying languages further, so the idea of studying abroad held genuine appeal to a young, naive person like me. And at the time I was thinking of majoring in one or both subjects, so I was hoping a study abroad experience would not only improve my fluency, but also steer me in a direction that would suit me both academically and for life after college. It’s difficult to anticipate what an experience like that will entail, but, as with most things in life, the reality wasn’t quite what I had expected.

I went with a group of about 30 other young Americans. During the week, we took classes for college credit on various topics, all of which were spoken completely in French. On weekends, we went on tours throughout France.

We weren’t allowed (more like heavily discouraged) to speak English, even with our fellow Americans. For me, that was not a problem. Additionally, we each lived individually with a different French family in Lyon. I think it’s safe to say my family didn’t quite know what to make of the strange American in their midst.

When I wasn’t in class or out touring the French countryside, I mostly spent my time alone in my room at my family’s home. I felt like a duck out of water and had no desire to be around others. And I was exhausted, so I slept beaucoup, which is saying something because I love to sleep. Apparently having to think, speak, read, and write in a different language for an extended period of time really wears a person out.

It wasn’t until a month or so into the summer that I realized that I really wasn’t cut out for this type of experience. Part of the problem was that I don’t speak very much, even in my native language. I live mostly in my head, observing and thinking. Verbalization of my thoughts is difficult for me, as I’ve previously discussed in the post Say Anything. So plop me down in a foreign country, a stranger in someone else’s home, and what happens? You guessed it – I clam up and shut down. The added pressure of comprehending conversations while simultaneously translating, formulating a logical response, and then verbalizing the response all while trying to have perfect social timing became crippling at times. Which isn’t to say that I never said a word the entire time I was in France. I did speak, but not as often as I would in English. And, as you know, I’m not exactly known as a chatterbox at home.

I got the impression that the family I lived with thought I was afraid to talk because I didn’t want to say something incorrectly. In reality, I had an excellent understanding of the French language and wrote and spoke it very well. But, as I’ve said before, speaking in general is where the difficulty lies, no matter what the language. The family was very understanding and patient, and of course there was no way for them to know what the actual problem was. I certainly wasn’t going to tell them! (And I didn’t know anything about autism back then, much less that I had it.)

On top of that, I was dating someone back home who was not supportive of my decision to study abroad, which didn’t help matters at all. He thought I would run off with a French guy and never return. At age 19, I didn’t have the self-awareness to realize that this was not a healthy relationship, which of course only caused more inner turmoil and complicated my experience that summer.

Inevitably, my fluency and understanding of French did improve greatly that summer, but I was glad to come home. I eventually graduated from college with a minor in French, but haven’t used it much since then, although I do sometimes think in French in my head or know the answer to crossword puzzle clues without having to use google translate.

Although my experience that summer was less than ideal, perhaps all was not lost. A recent study has shown that bilingualism in autistic children allows them to compensate for deficits in theory of mind and executive function and serves as a natural therapy in these areas.

Let’s diverge for just a minute to define what these two terms mean. Theory of mind refers to the ability to attribute the beliefs, intents, desires, and emotions to ourselves and others. Perhaps a simpler definition is the ability to put yourself in someone else’s shoes. Executive function skills are the mental processes that allow us to plan, focus attention, remember instructions, and juggle multiple tasks successfully. In other words, being able to multi-task effectively.

This makes sense to me. Certainly being able to comprehend and converse in a different language would allow for a great deal of practice in multi-tasking and contemplating other’s perspectives.

I began teaching myself French when I was in junior high because it interested me, and was able to learn and excel at two foreign languages simultaneously in high school. My autistic son is currently taking Spanish, which is the only foreign language his school provides, but is also teaching himself German in his free time. It seems to be something that really interests him. In fact, he has expressed a desire to study abroad in Germany after high school, which quite frankly terrifies me because I worry that will only cause more social isolation for him.

I began to wonder if there is a natural tendency for autistic people to gravitate toward other languages. So this time I did google it. One study I found showed that autistic children can easily become bilingual. It turns out that having great memory and an intense desire to learn all there is to know about something that is of special interest is (dare I say it?) a superpower for those on the spectrum, which is a definite benefit when it comes to learning new languages.

On the other hand, being able to learn a foreign language almost seems counter intuitive considering that, on face value, autistic people appear to have enough trouble learning one language (i.e., their native tongue). But perhaps it’s not the language itself that’s the problem; maybe the problem lies with all the social considerations that go along with language. At least it was for me, but, of course, I’m only one person speaking solely for myself.

When I think back to that summer twenty-five years ago, I have conflicting emotions about it. Was it a great experience? In some ways, yes, and in others, no. Did good things come from it? Yes. Was it difficult for me? Very. Was I able to survive in a foreign country? Yes. Did I learn a lot about French language and culture? Oui, bien sur. Did I learn a lot about myself? Tout a fait!

And, all these years later, I’m still learning. C’est la vie, n’est-ce pas?

The eyes have it

Believe it or not, there was a period of time when I used to raise my voice. In other words, I yelled. Often.

Those who know me might be surprised to learn that it happened at all, considering I’m usually very quiet, soft-spoken, and reserved, but I’m not proud to admit that I did raise my voice in an unproductive manner more than I should have.

I became a mother for the first time over sixteen years ago. Most of my verbal outbursts were directed at my first two children when they were toddlers and preschoolers. I was in my late twenties at the time and still several years from being diagnosed with autism spectrum disorder.

Me with my two eldest children

I should clarify that, as far as normal behavior goes, my yelling probably wasn’t much different from that of other parents, but it was still more than I had ever yelled before in my life. It simply is not in my nature to yell.

Let’s say you’re at a rock concert, for example, and someone on the stage wants the crowd to give a louder response than before, so they’ll scream into the microphone, “I CAN’T HEAR YOU!!!”, which is the signal for everyone to repeat what they already shouted but louder. Yeah, I can’t do that. Physically, I can’t bring myself to yell like that, especially on command. I might be able to squeak out a timid “Woo!”, but that’s really the most noise I can possibly force out of my vocal chords.

Most of the time my spontaneous yelling occurred when I lost my temper because I had to repeat myself over and over again to my young children. Although autistic people do require some type of repetitive behavior to help calm themselves, having to repeat the things I say has always had the exact opposite effect on me. I get so frustrated and my words usually contain a distinctive hint of annoyance the second time. And if I have to repeat myself a third time – watch out!

It seems like no one can hear me or even acknowledge me. I know I have a quiet voice, but are they even making an effort to listen to me? Can anyone hear me? Am I invisible? It makes me feel like no one even cares what I have to say and doesn’t deem me worthy of the effort.

One of the things that I have since learned about autism is that many on the spectrum have a very difficult time making eye contact with others. Looking someone in the eye makes me extremely uncomfortable. It involves a level of intimacy that I reserve only for a select few. I know that most people find eye contact a necessary social requirement when having a conversation with someone, but I mostly find it painfully excruciating.

Over the years I’ve developed the technique at looking vaguely in another person’s general direction when they speak. As seen through my eyes, I enlarge my field of vision without concentrating on any particular point instead of engaging in the penetrating gaze that direct eye contact requires. This seems to satisfy the other person’s need for eye contact and my aversion to it, although maybe it’s not as effective as I hope.

We’re always told not to stare at someone – except when talking to someone, apparently – so I long ago developed the habit of sneaking glances out of the corner of my eye instead of turning my head to look at something or someone. You might have noticed the picture of me as a young girl at the top of my blog page; the side-eye has been with me for as long as I can remember. You can even see me looking out of the corner of my eyes in the picture of me with my children above. I always thought I was getting away with my furtive glances, but I have had a few people call me out on it. “Why do you do that thing with your eye?” they have asked.

When I first suspected that my son and I had Asperger’s (i.e., autism), I began a quest for books written by authors on the spectrum. I found Look Me in the Eye: My Life with Asperger’s by John Elder Robison at our local library, in which Robison describes his experience growing up in the 1960s with undiagnosed Asperger’s syndrome.

Why is eye contact so difficult for those of us on the spectrum? In his memoir, Robison writes:

“Look me in the eye, young man!”I cannot tell you how many times I heard that shrill, whining refrain. It started about the time I got to first grade. I heard it from parents, relatives, teachers, principals, and all manner of other people. I heard it so often I began to expect to hear it.

Sometimes it would be punctuated by a jab from a ruler or one of those rubber-tipped pointers teachers used in those days. The teachers would say, “Look at me when I’m speaking to you!” I would squirm and continue to look at the floor, which would just make them madder. I would glance up at their hostile faces and feel squirmier and more uncomfortable and unable to form words, and I would quickly look away.

I didn’t know why they were getting agitated. I didn’t even understand what looking someone in the eye meant. And yet, I felt ashamed, because people expected me to do it, and I knew it, and yet I didn’t. So what was wrong with me?

Everyone thought they understood my behavior. They thought it was simple: I was just no good.I came to believe what they said about me, because so many said the same thing, and the realization that I was defective hurt. I became shyer, more withdrawn.

To this day, when I speak, I find visual input to be distracting. When I was younger, if I saw something interesting, I might begin to watch it and stop speaking entirely. As a grown-up, I don’t usually come to a complete stop, but I may still pause if something catches my eye. That’s why I usually look somewhere neutral – at the ground or off into the distance – when I’m talking to someone. … And now I know it is perfectly natural for me not to look at someone when I talk. Those of us with Asperger’s are just not comfortable doing it. In fact, I don’t really understand why it’s considered normal to stare at someone’s eyeballs.

After reading Robison’s exquisite work, it dawned on me that my failure to make eye contact with others might be the reason why no one can hear me when I speak because they didn’t even realize I was talking to them! Once I started making eye contact when I spoke to my children, they seemed to actually listen to what I was saying. And I discovered that looking into the eyes of someone who is trustworthy and nonjudgmental doesn’t make me as uncomfortable as it has in the past.

However, I can’t say that I’m so comfortable with everyone else that I’m yet able to consistently make eye contact during conversations. Those of us on the spectrum know that we are inherently odd, and the instinctive feeling of being judged by others in social situations never really goes away. Invariably, looking someone in the eye creates a vulnerability that sometimes is just too much to bear. But know that, if I am able to look you in the eye, I am more comfortable with you than the vast majority of people, which I would consider a great compliment!

At any rate, I am now able to make eye contact more than ever before. As a result, I repeat myself a lot less these days, and yell a lot less, too, if ever. I wish I could go back to those early days of parenting and take back the yelling I did then. And I wish I would have had myself figured out long ago, but at least I’m learning more and more about myself as time goes on and working to improve in areas where I am capable.

Understanding things about yourself that aren’t inherently apparent is a necessary key to solving your puzzle. Not only for your own sake, but also for everyone else’s. And, in my case, for the sake of their eyeballs, too.

Hope for the hopeless

My son fishing on a recent family vacation

It was November 2017. My 11-year-old son had just been diagnosed with autism spectrum disorder.

In some ways, this was the best thing that ever happened to him and our family. Finally knowing the cause of his struggles and behavior gave us the missing key to get him the help he so desperately needed. With a verified medical diagnosis, he was able to receive special education services as well as modified accommodations at school. And we, his family, were better equipped with the knowledge and understanding to assist him with navigating the world as an autistic person.

But in other ways, this was a terrifying, anxiety-inducing realization. All kinds of new questions arose about what the present and future would hold for him. Granted the future is never certain, but we began to worry about things we never would have thought twice about before.

Before he was diagnosed, we had always hoped and assumed that he would one day become the person who would attain his wildest dreams. The diagnosis called all of those hopes, dreams, and assumptions into question.

Would he ever be able to live independently, able to take care of himself on his own? Or would he always need someone else to live with him for the rest of his life?

Would he be able to go to college? He excels scholastically, but would he be able to succeed with all the social and environmental changes that college involves?

Would he ever be able to hold a job, have a career, and achieve all the things he wants to accomplish?

Would he ever make a friend, or meet someone to share his life with, or have a family of his own?

At age 11, he was still small enough for me to be able to physically restrain him, if necessary. Would I still be able to do that when he was fully grown? (When I talk about physically restraining him, I’m referring to the use of deep touch pressure therapy, which I have discussed before in my post A Day in the Life.)

He’s almost 15 now and some of these questions remain unanswered, but I do know one thing is certain: I am more hopeful for him now than I was four years ago. Since the time of his diagnosis, he has grown immeasurably, and not just physically. Today he is the size of a grown man, standing almost six feet tall and still growing. Yet I can’t remember the last time I felt it was necessary to intervene with deep touch pressure therapy.

And, more importantly, the emotional and psychological maturation process he has undergone during these past few years is almost hard to believe. Before I was getting daily phone calls from the school about issues he was having. As I sit here writing this now, I am struggling to remember the last time he had an issue at school that warranted contact with home. In fact, he exceeded all of his special education goals and was formally exited out of special education at the end of the last school year. He still has a 504 plan in place, just in case there might come a time during high school that he needs special accommodations, but he no longer requires specialized instruction. During our final meeting with his junior high special education teacher, she was so emotionally overcome by his metamorphosis – in addition to how much she would miss having him as a student – that she broke down in tears. Happy tears, mind you!

If you’ve read my previous posts, you are most likely already aware of the necessity of routine for an autistic person in order to maintain a sense of structure in an unpredictable world. My teenage son has been doing his own laundry for several years now because he wants his clothes washed a certain way. Here we are in summertime, when everyone in our family is on a different schedule, so he cooks his own meals on a daily basis. He is responsible for taking out the garbage and recycling, taking care of his cat, mowing the lawn, and snow removal. Most of the time he doesn’t even have to be reminded to do these things; he will do them on his own initiative. Asking a young child to do chores is stressful enough – I always dreaded the “but I don’t want to!” and the whining – but was even worse when he was younger because the very thought of having to do something other than what he was already doing would set him off. Now he will calmly take care of things without any hesitation … usually.

It will still be a few years before we start contemplating what life after high school will entail for him, and I wish I could say that it won’t be much different than what any other typical teenager faces. Realistically, though, I know there will be additional challenges that we will encounter. I was, however, encouraged to discover that many colleges and universities now offer specialized support services for autistic students. I don’t know that these services were available when I was in college 25 years ago, but I am thrilled to know that they exist now.

Four years ago, a seemingly insurmountable obstacle stood before us. Diagnosis was the first step. Knowledge of autism showed us the map we needed to begin our journey. Resources gave us the necessary tools to assist us along the way. The road has been rocky and fraught with peril, but we cannot and will not give up.

We will keep climbing this mountain, one step at a time. For him. One day we will reach the summit.

Climbing his mountain

Once upon a dream

No one is useless in this world who lightens the burden of it to anyone else.

~ from Dr. Marigold

by Charles Dickens

It’s 5:31 am on Tuesday, June 8, 2021. I’m not usually awake or coherent at this time of day, but today is exceptional. Today I am recovering from a distressing dream I just had.

Many years ago I heard that writing down a dream immediately after waking is the best way to remember it, although I have never actually tried this tactic. But, as they say, there’s a first time for everything.

As the dream begins, I find myself as a passenger in a car with an assortment of high school classmates. Nick. Heather. The other Heather. Tanya. Shelly. Even though I knew these people a long time ago, it’s the present and we aren’t teenagers anymore.

Freezing rain is falling, so we drive carefully. We want to go out to eat in the area near where we grew up, but are having a hard time choosing a restaurant. This version of the town is very different than what I remember from my youth. It’s growing and prosperous – almost like suburbia if there had been a nearby metropolis for it to attach itself to, not the small, Midwestern farming community it actually was.

We end up at a place outside of town that I’m told is called Ted’s. It’s mostly a burger and steak restaurant like those common in the Midwest, but also one of those establishments that people from miles around patronize because of the amazing, award-winning food. The others had eaten here before, but it was new to me.

The restaurant is packed with people. As is often the case, I find myself at the end of the line in our group as we wind our way through clusters of diners and down long hallways. Have you ever felt like an afterthought, as though you’re just tagging along with people who don’t seem to care if you’re with them or not? That’s a feeling I’m all too familiar with in real life.

Back to the dream. The building itself seems to be a converted house with multiple additions as the restaurant expanded over the years. I’m trying my best to keep up, but I don’t know where I”m going, unlike the rest of the people in my group. There are so many twists and turns that I soon find myself separated from the others and utterly lost.

As I stumble along, I lose my shoes somewhere and spend the next twenty minutes or so looking for my group. When I finally find them seated at a booth in “the dungeon”, which is located in what used to be the basement, I am beyond ticked. No one seems to care that I had gotten lost in this unfamiliar surrounding. No one came looking for me. I grab a bottle of ketchup and squirt it in the other Heather’s face. To my surprise, my parents are there and I squirt them, too.

The others have already ordered their food. It seems I wasn’t worth waiting for. This hurts. I silently sit at the table, stewing internally now, as waves of anger wash over me. Everyone else goes on with their meal as though nothing has happened.

When the waitress asks me what I’d like, I tell her that I’m not hungry. In reality, I am famished, but what I really want isn’t on the menu, even though there are pages and pages of options. When I was younger, a local restaurant made an entree comprised of a slice of bread topped with a hamburger patty, french fries, and melted cheese. If you know what a rare bit burger is, it was similar to that but the cheese was milder and, in my opinion, preferable. This is what I’m longing for now, but they only have the rare bit burger on the menu. Because they don’t have what I want, I stubbornly and defiantly order nothing.

I happen to glance at the front of the menu and notice that this place is called Otto’s, not Ted’s as I had been told. More internal outrage.

Someone seated at the other end of my bench is absentmindedly rocking back and forth, forcing me to as well. This constant to-and-fro motion becomes the proverbial straw that breaks the camel’s back. I fly into a rage, grabbing the ketchup bottle again and squirting people at random. I threaten someone with mustard instead when they complain.

I’ve had enough – I have to get out of this place immediately. The noise, people, and my own outrage overwhelm me so much that I’d rather go outside in the sleet and rain without shoes than stay in this veritable hell one more second. I hear other diners making comments about me, saying how I am behaving like a child and need to control my temper.

And then I wake up. I’m lying in bed, feeling as though I’m hyperventilating, my breathing rapid and shallow. The tears start to flow as I realize what just happened to me. For the first time that I can remember, I had an autistic meltdown, and it happened within my dream. Now I know what it really feels like, and I sob for anyone who has ever experienced a similar episode.

(You can read more about autistic meltdowns in my previous post The price of a gallon of milk. To my knowledge, I have never actually experienced a meltdown in real life; instead I am more prone to shutdowns, which you can also read more about in my post Oh, the noise, noise, noise, NOISE!)

I think mostly of my son, who is now fourteen years old and frequently experienced meltdowns for most of his life up until the past year or so. I had so much sympathy for him prior to this, but now I have empathy as well.

I’ve had panic attacks before, but this was more than that. As my rage and anger grew inside me during the dream, I could see beforehand what was going to happen, but there was nothing I could do to stop it from happening. And what’s worse is that no one else seemed to understand or care about what I was going through. Everyone either dismissed me or acted as though I was behaving immaturely.

As is often the case with dreams, some of the specifics seem rational as the dream is occurring but don’t make much sense to the lucid. However, one thing is clear to me – the most emotionally damaging part of the dream was how other people either acted as though I didn’t exist or didn’t understand what I was going through.

I do understand that it’s difficult to always know what others are experiencing and what internal burdens they must bear, especially when they’re complete strangers. However, I propose that one goal we all should have is to do what we can to lessen the burden of others as we collectively tread upon this giant rock hurtling through space.

So I’m asking you directly, right now – how are you going to lessen the burdens of your fellow humans? Does criticizing, berating, judging, or demeaning someone actually help in any way? I confess that, through my lack of understanding and empathy, I have displayed such reactions in the past, although I’m trying my best to do better.

Others may be experiencing things that you don’t understand, but I assure you that your reaction or inaction sends a very clear message tot hem. Please sincerely contemplate this and adjust your deeds, thoughts, and actions accordingly as we do our best to make this world a better place for everyone.

Yes, it’s uncomfortable for all involved, but consider this – who is more uncomfortable? Who has the greater burden to bear? Is it you?

“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.


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.


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.


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.