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.
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?
It’s confession time again. Are you ready for another one? Here it is: I was not a very good teenager. What I mean is that I was a total failure as a teenager. And when I say failure I really mean that, as far as typical teenager behavior goes, I did not conform to stereotypical teenager behavior hardly at all.
I was eighteen years old the first time I tried alcohol, unless you count the time I accidentally took wine at communion. I was raised in a church that only served grape juice; when I was invited to perform a musical solo at a neighboring church, I didn’t realize that one line served grape juice and the other served wine. That was an unpleasant, unwelcome surprise. And I have never smoked a cigarette or marijuana, never experimented with illegal drugs.
I was a teenager in the 1990s when grunge rock took over the airwaves. Nirvana, Pearl Jam, Soundgarden, Alice in Chains. If you were to ask me, I could probably only name a few of their songs. I was even in attendance when Pearl Jam was inducted into the Rock and Roll Hall of Fame in 2017 and honestly couldn’t have cared less. (I was really only there to see Journey, my favorite band with the greatest vocalist of all time, Steve Perry.) After all the fabulous rock music made in the 1970s and ’80s, I have to say that I felt totally ripped off by the music of my teenage years. It’s supposed to be the music of my generation, but I personally could not identify with it at all.
If you’re not familiar with grunge music, the name implies a lot about the genre. Filled with angst, its raw sound and dark undertones delve deep into trauma, neglect, social and emotional isolation, and a desire for things to be completely different than reality. Perfect music for the typical teenager. Unless that teenager is someone like me.
I couldn’t understand why the music had to sound so angry and unhappy. And what are they saying? I could never understand the lyrics, either. The singers’ voices sounded whiny to me and the guitars were harsh. As someone who has received extensive musical training, grunge music did not resonate with me at all and I made no effort to dig deeper into its underlying messaging.
It wasn’t until a few months ago that I discovered the meaning behind Pearl Jam’s 1991 monster hit Jeremy. I had no idea what that song was about until I stumbled upon an article recently and discovered the song was based on the real-life suicide of Jeremy Delle, a 15-year-old who shot himself in front of his English class in Texas. Suddenly the song had an entirely different meaning and gravitas to me.
At home drawing pictures Of mountain tops With him on top Lemon yellow sun Arms raised in a V And the dead lay in pools of maroon below
Daddy didn’t give attention Oh, to the fact that mommy didn’t care King Jeremy the wicked Oh, ruled his world
Jeremy spoke in class today Jeremy spoke in class today
Clearly I remember Pickin’ on the boy Seemed a harmless little fuck But we unleashed the lion Gnashed his teeth and bit the recess lady’s breast
How could I forget And he hit me with a surprise left My jaw left hurting Dropped wide open Just like the day Oh, like the day I heard
Daddy didn’t give affection, no And the boy was something that mommy wouldn’t wear King Jeremy the wicked Oh ruled his world
Jeremy spoke in class today Jeremy spoke in class today Jeremy spoke in class today
Try to forget this (try to forget this) Try to erase this (try to erase this) From the blackboard
Jeremy spoke in class today Jeremy spoke in class today
Jeremy spoke in Spoke in Jeremy spoke in Spoke in Jeremy spoke in class today
Although inspired to write the song after reading about Delle’s suicide in the newspaper, lead singer Eddie Vedder also drew on his own personal experiences in the lyrics. The video below includes an interview with Jeremy’s mother, Wanda, where she tells more about the boy behind the story.
What in the world does all this have to do with autism? In all the information I read, there was no indication that Jeremy Delle had ever been diagnosed with autism spectrum disorder and I’m not suggesting he might have been on the spectrum. On the face of it, this story has no relation to autism whatsoever.
However, it did trigger something in me. Living with autism every day creates a heightened awareness of social isolation and its effects that others might not see. One recent study found that people diagnosed with autism spectrum disorder are three times more likely to attempt suicide than the those without autism.
And, just like Jeremy’s mom, I have a fifteen-year-old son, although mine is on the spectrum. This beautiful, kindhearted, brilliant young man of mine who loves knowledge and nature, but has never – not once in his entire life – had a friend over or been invited to do anything with anyone his own age. This boy who rarely leaves the house except to go to school. He seems happy enough at present. He says it doesn’t bother him, but yet I still worry.
I worry because I know what it’s like to experience social isolation. I know what it feels like to sit alone in a cafeteria full of other people my own age, seemingly invisible. I know what it’s like to feel like there’s not one single person in the world that I could relate to, especially during my teens and early 20s. I know what it feels like to not know how to engage with others socially, to feel like a square peg trying to fit in a round hole, to feel like I was dropped off on the wrong planet. To live in a world that’s made for social people where I don’t belong. And I also know what it’s like to have my son come to me and say that he’s having thoughts of killing himself.
I try to end my posts on a positive note, but unfortunately reality has shown us that life doesn’t always give us the happy ending we want. Not for Jeremy and his family, and not for countless others who, for whatever reason, feel that their continued existence is too much to bear.
If you or someone you know is having thoughts of suicide, help is available by calling the National Suicide Prevention Hotline at 1-800-273-8255.
I was recently at the DMV to update my driver’s license to get my Real ID for an upcoming trip. The DMV clerk that day looked at my documentation, performed the eye examination, and asked me the routine questions. Veteran? Organ donor? Autism?
Wait, what?! I was beyond surprised when she asked me if I had autism, because this was a new and unexpected question compared to previous visits. I think she was equally surprised when I answered, “Yes.”
“… Are you sure?” she inquired further, looking at me incredulously.
Yep, pretty sure.
Since the last time I had renewed my driver’s license, one of the new optional designations is to add an autism spectrum disorder indicator to the license. According to my state’s DOT website, this designation was added “in order to help avoid miscommunication issues and negative interactions for people with an autism spectrum disorder, simply because they may not behave in a way that is expected. The information assists in alerting law enforcement that the driver may exhibit a demeanor or display behaviors that could otherwise be misinterpreted. This is a voluntary indicator and is not a restriction of driving privileges.” Very cool.
Sometimes I’m hesitant to tell others about my diagnosis. It’s not really something that I talk about much beyond this blog. Not because I’m ashamed, but because I’m afraid people won’t believe me. Like the lady at the DMV. When you think of autism, I’m probably not exactly what comes to mind.
For all intents and purpose, despite feeling like I was born on the wrong planet, I look and act like a relatively normal person. (Key word – relatively.) Granted I’m highly introverted and socially awkward, but, as you probably know from reading my previous blog posts, that doesn’t necessarily equate to autism.
After my son was diagnosed with autism, I began noticing many characteristics of autism spectrum disorder that also applied to me and I really believed I was also on the spectrum. So I decided to get evaluated myself. I needed to know once and for all why I am the way that I am.
Although my son and I both exhibited some of the symptoms and behaviors of ASD and are quite similar in many ways, we aren’t carbon copies. I have always tried to internalize just about every possible symptom or behavior that would make me appear “abnormal” to others, whereas he has openly exhibited classic autistic behavior all his life. But, of course, if you don’t know what these autistic characteristics and behaviors are, you wouldn’t necessarily recognize autism when it presents itself.
One thing that is inherent in the majority of females on the spectrum is that we mask or camouflage our autism very well. In other words, we are experts at hiding and minimizing our natural tendencies, which makes recognizing autism in females more difficult than in males. The ratio between boys and girls diagnosed with ASD during childhood is approximately 4:1, although that’s not necessarily because autism is more prevalent in males. Many girls intuitively develop the ability to conceal their symptoms which, therefore, go unnoticed by parents, teachers, and doctors. In adulthood, the diagnosis ratio narrows to 2:1 male to female, presumably because adult women have developed the maturity to more capably recognize their deficiencies than young girls. *points at self*
Although she doesn’t intuitively understand certain social norms, a girl or woman on the spectrum might painstakingly observe someone else who seems capable of behaving normally in social situations and then copy or imitate that person’s behavior so as not to seem abnormal. Another strategy she might use is to appear well behaved, meek, and polite in order to avoid interactions with others.
While autistic boys often fail at establishing and maintaining relationships with peers, a girl on the spectrum might actually be able to develop a close friendship but usually only with someone who demonstrates an almost maternal-like attachment to her, i.e., the other person feels compelled to take her on, almost like their personal project. She is unlikely to take the first step at establishing and maintaining a relationship, but instead waits for the other person to make the first move.
Thinking back to friendships I had in childhood and young adulthood, I can check off nearly every masking behavior box. I’ve never taken the initiative in any relationship I’ve ever had. Every close friend I’ve had (and there have only been a few) has occurred only because the other person seemed to take an interest in me for some unknown reason. I don’t strike up conversations with people. I will never reach out to a friend or acquaintance just to find out how they are or what they’re doing. I don’t make phone calls or send texts or emails unless there’s a very valid reason to do so. I can now openly admit that I’m not a good friend and am not good at maintaining friendships, although when I was younger I tried really hard to convince myself and others that I was more normal.
In the Complete Guide to Asperger’s Syndrome, author and practicing clinical psychologist Tony Attwood highlighted one autistic person diagnosed in adulthood who described their experience as follows:
“I was always ashamed of who I was, so I never told the truth about anything that would embarrass me. If you had asked me if I had troubling understanding others, I would have said no, even though the true answer was yes. If you had asked me if I avoided social contact, I would have said no, because I wouldn’t want you to think that I was weird. If you had asked me if I lacked empathy, I would have been insulted, because everyone knows good people have empathy and bad people don’t. I would have denied that I’m afraid of loud noises, that I have a narrow range of interests, and that I get upset by changes in routine. The only questions I would have answered yes to would have been the ones about having unusually long-term memory for events and facts, reading books for information, and being like a walking encyclopedia. That’s because I liked those things about me.”
That’s me on the left, hiding behind my witch’s mask, with my older brother, Dracula.
In April 2018, I announced on social media that I had been diagnosed with autism spectrum disorder. I had expected to receive some doubtful responses from at least a few people. That’s really the main fear I had before making the announcement – that people wouldn’t believe me. Astonishingly, not a single person has said this to me to date. (At least not to me directly, anyway.) In fact, I have received nothing but kind, thoughtful, and supportive responses, for which I am extremely grateful. This support has made my journey much more bearable and allows me to feel more open and willing to discuss autism.
So thank you to those of you who have believed me and believed in me. It truly means more to me than I can adequately express. If you or someone you know needs help identifying characteristics of autism in females, this checklist might be beneficial.
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.
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.
“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?
Note to readers: Although there are many types of love, this post deals only with the the romantic kind.
On our wedding day
My husband and I are celebrating our seventeenth wedding anniversary this weekend. Considering that only five percent of people on the autism spectrum ever get married, I consider this something of a miracle. Five percent!The odds are not in our favor.
Love is complicated enough but becomes even more so when one or both of the people involved are on the autism spectrum. Have you seen the Netflix series, Love on the Spectrum? It chronicles the challenges several autistic people encounter attempting to find and establish a romantic relationship. I encourage those who might be interested to watch the series, if able. Here’s the trailer.
SPOILER ALERT! While endearing to the audience, most of the people featured on the series are unsuccessful in finding someone with which to connect and share their lives.
What happens when a person attempting to establish and maintain a relationship has extreme difficulty doing so? Let’s refer back to one of my original posts, Autism 101. In order to be diagnosed with autism spectrum disorder, a person must show and demonstrate several characteristics, including:
problems with social and emotional reciprocity (e.g., normal conversation, sharing emotions, interacting in social situations)
problems with non-verbal communication (e.g., interpreting body language, making eye contact)
developing, maintaining, and understanding relationships
Not exactly a recipe for domestic bliss, is it? Perhaps the marriage statistics for people on the spectrum seem a bit more realistic knowing this information.
Now seems like as good a time as any to delve into my romantic history. (Don’t worry, it won’t take long.) As a child and teenager, I always hoped to find that special someone with which to share my life. Of course, at that time I still held out hope that I would eventually develop into a “normal” person in time and have a normal relationship. Unfortunately, I didn’t have a realistic understanding of what a healthy relationship involved.
I had crushes come and go but none ever showed any reciprocal interest in me. Then again, I never revealed my feelings to anyone, either.
My first long-term, on-again-off-again relationship was poorly chosen and executed. We didn’t have much in common and were not well-suited, although of course I didn’t realize it at the time.
After that relationship ended (for the final time), I jumped into an even more unhealthy and unhappy one that somehow managed to limp along for several years. Jealousy, lack of trust, control issues, constant arguments … you name it. Once again, I didn’t realize it was unhealthy at the time. I thought it was a sign of strength and commitment to stay, no matter how difficult it was. And it was really difficult. Beyond difficult. Despite the difficulties, I stayed in the relationship because I was afraid of being alone. I had such a hard time meeting people and establishing connections that I feared I would never meet anyone ever again. I thought it was better to have someone and be unhappy than have no one and be unhappy anyway. To this day, I have nightmares that I’m trapped in that relationship and can’t escape. Fortunately I did.
That brings us to my final and current relationship. My husband and I met at work. We were just friends at first, but a mutual attraction eventually developed. At that time and for many years thereafter, we didn’t know about my autism. I wasn’t diagnosed until just after my fortieth birthday. Learning this information at an older age caused a lot of emotions to surface – mostly relief but also anger, guilt, and regret.
I sometimes wonder how things would have been different if we had known beforehand. He might not have been interested in pursuing a relationship with me had he known. Had we had known sooner, he could have made a more informed decision on committing to me. He might have been able to find someone else who was easier to deal with and more able to maintain and participate in a “normal” relationship. I know it’s not easy being married to me. I have so much trouble communicating – especially when it comes to feelings – and reciprocating things that are expected in a relationship. Honestly, I don’t think I’m cut out for relationships. Luckily, I married a very understanding, patient, and loyal guy.
All in all, I think most people on the spectrum would agree that finding and maintaining love is monumentally challenging. Given that the term autism is derived from the Greek word autos meaning “self,” it’s unsurprising that people on the autism spectrum are better able to function alone than with another person.
Although most wouldn’t consider a life of social isolation to be happy and successful, those of us on the spectrum might disagree. Swedish researchers followed 100 autistic boys and men for 20 years after their diagnosis in order to try to determine the level of contentment these men have with their lives. While a large number of the men in the study displayed extraordinary difficulties with relationships (both platonic and romantic), employment, and other areas considered necessary to achieve happiness, many of the men seemed happy nonetheless. Researcher and psychologist Adam Helles stated, “Maybe we don’t think a person with Asperger’s is living up to his potential, but perhaps he feels that he is.”
Perhaps we shouldn’t use traditional milestones to judge people who have difficulty with or are unable to conform to the traditional guidelines of expected behavior in the first place. After all, having extra challenges doesn’t mean a person can’t live a happy life.
Am I happy? I have an amazing husband and children, and I do work that I love. That’s really all I need. I don’t have much of a social life or friendships outside of my family and work, and I am perfectly content with that. If I had the chance to ride this roller coaster all over again, I would be the first one in line. Yes, I’m happy.
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.
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.
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.
Life on the Spectrum 