What I'd Like You to Know About Those of Us on the Autism Spectrum
Good evening, ladies and gentlemen.
First I’d like to thank you all for taking time out of your busy schedules today to come here and read this. I am genuinely flattered because, you see, to me, all of you – whoever you are and wherever you are – are the most important people in the world.
Chances are you are overworked, underpaid, and under-appreciated. You have ridiculous schedules, insufficient materials, and are frequently asked to do the seemingly impossible. You get paid a fraction of what any professional entertainer or football star might make.
No one is ever going to wear your ID on a jersey or chant your name from the stands. At least not that you know of.
Well, maybe that is not true.
You see, precisely 20 years ago, a man standing in front of a classroom of 30 kids looked at me and did something that changed my entire life.
He recognized that I was different. Specifically he figured out that I – a troubled and troublesome child who spoke little or screamed much, who could not stay in my chair or focus on my books, a boy who fought in the schoolyard and dressed like I used a dumpster for a closet, a student who would not look him in the eyes or who would call him a (obscenity deleted) – was autistic.
Yes, that’s right.
Twenty years ago in August, a high school professor discovered I’m on the autism spectrum.
And he used that knowledge to get me the help I needed.
Today, I am a published author, a produced playwright and a successful tutor. I own my house and car, and am debt free. I have three jobs I love, and I can look you in the eyes and tell you all about them.
I owe my life to a person who cared enough about people like me to have educated himself along the way.
So today, I would like to talk to you about autism so someday someone will be chanting your name, maybe not from the bleachers, but instead from behind a lectern, or in an interview with Wired or Forbes or Rolling Stone.
I want you to understand me and all the people like me so you too can save someone’s life. But we’d better get down to it. We only have a limited time to share.
So let’s start with this.
How do you recognize a child with autism?
That really depends on the person. You see, we are all different and in many variegated ways. That is why autism is a spectrum disorder. But there are quite a few commonalities and there is an agreed upon list of characteristics as provided in the DSM-5, which is often considered the gold standard among those of us who live the life and work with fellow autists.
So what characteristics your person exhibits depends on where he or she is on the autism spectrum.
And to make it more complicating, all of us with ASD – autism spectrum disorders – are not only different depending on where we are on the spectrum itself, but also based upon when we were diagnosed and how much therapy and intervention we have received.
We have to learn how to compensate with all of those things, and how we do that will vary from person to person.
So what do you look for?
Let’s begin here with the less stereotypical behaviors of the autism spectrum, the almost purely social.
While less immediately visible and more nuanced than the behavioral markers of the spectrum disorders, these are important.
For example, the person in question might fail to respond to his or her name or appears not to hear you at times. This is a big one. A lot of us have a neurological problem dealing with the speech centers in our minds. The truth is we tend to hear everything at exactly the same volume. To us, your voice sounds as loud as and is about as important as the kid scuffing his sneakers under the desk behind us. Just try again, OK? But never touch without permission (more on that in a minute).
We tend to resist cuddling and holding and seem to prefer playing alone — we may retreat into our “own world.”
We might not like to be touched. All of our sensations are over-amped, and this includes our sense of touch. To you, a caress may be a wonderful thing; to us it may mean we can feel how dry or moist your hand is, how many calluses are on your fingertips, if you bite your nails, how warm or cold your hand is, and frankly we will focus just on your hand and how many layers of stimuli there are, and in that moment that one to five extra layers may just be way too much for us to process. I hug two people on Earth, and I suspect the second one is as uncomfortable with the idea as I am.
And yes, we may have poor eye contact and/or lack facial expression. The eye contact issue is a big deal here in America. This is not something I was born knowing how to do. That part of my brain is different, OK? I still have trouble looking people in the eye. This is not a sign of disrespect. I may think you are the most awesome thing in my universe, but I still might not look you in the eye. So again, I’m not lying to you, I am not dissing you, I am not guilty of pinching little Suzy.
And facial expressions are another biggie. I am actually face blind. A lot of us are. We were not wired to tell a smile from a frown, much less a real smile from a fake one. Looking out over you, I do not see your faces. I can’t tell if you are smiling, smirking, frowning, or looking at me like I’m the biggest liar since the Baron Von Munchhausen. I have to, and can, read your body language to gauge how you feel about what I am saying right now. Again, I learned how to do all of this. I had some amazing teachers. Your new student – the awkward, shy one, has not learned how to do this yet, may never learn how to do this, and your frown might mean absolutely nothing to him or her. Not a thing.
In fact, your face may mean nothing to the child. I have failed to recognize my partner, my best friend, my adoptive father, and my brother on various occasions when I saw them out of context or if changes were made. One friend has gone bald and I looked at him for 20 minutes before he came to my rescue, and another has shaved off his mustache and I guarantee you I won’t recognize him if we meet either.
We may not speak or have delayed speech or may even lose previous ability to say words or sentences. A lot of us have language problems on top of cognitive hearing problems. We may be trying to repeat what we hear you do and be hearing it incorrectly, or we may completely understand you and want to share our thoughts with you only to have the words hang up in the electrical storms taking place between our brains and our mouths.
Then we tend to be unable to start a conversation or keep one going, or may only start a conversation to make requests or label items. Yes, coherent conversation is difficult for most people, even you. You get distracted, or get nervous, your cell phone rings, your nose itches. For us, that is all magnified by the fact that our brains do not look, function, or really even vaguely resemble yours. We think faster in terms of sheer hertz per second, we think more literally, we tend to associate differently. So it is not really surprising that we have trouble talking to you. You might say, “Beautiful day, huh?” And we might think “Yes, gorgeous, like the day I took the train ride through the golden leaves with Mom and George and Jim got a bug in his mouth and I got a hotdog,” and what comes out of our mouth is “Hot dog.” And then you look confused or say, “What?” and we panic and go, “Oh, no what comes next?” And so on. Or maybe we hear, “ Beautiful hay, huh?” and wonder about your odd grain fetish.
Some of us speak with an abnormal tone or rhythm — may use a singsong voice or robot-like speech. This one usually comes from cognitive hearing disorders but is sometimes associated with speech center challenges.
Another vocal oddity is that we may repeat words or phrases verbatim, but may not seem to understand how to use them. It’s not just that we might not understand the words – that depends on verbal fluency – but that we get the wrong context or because we have associated them improperly… I recently read a story of a young autistic boy who told his teacher, “You go straight to Hell, Lieutenant!” when he was upset. He had apparently seen this line many times in his father’s favorite movie and rather than associating it with the military or the situation or even with the actual meanings of the word, he just associated them with being upset. He was upset and this was the only way he knew to express that to his teacher. She misunderstood. He was expelled. And the whole fiasco cost him 30 days of education and emotional trauma and cost her a potentially good student who just needed a bit more understanding.
There will also be times when we appear to misunderstand simple questions or directions. Especially if you expressed yourself idiomatically or while we were fascinated by the show of leaf shadow light on our desks.
But the biggest communications-related thing is that we may not seem to express emotions or feelings and appear unaware of others’ feelings. I want to get this clear right now. We have feelings and are capable of empathy. Period.
The lack thereof is characteristic of sociopaths or psychopaths of a certain type. We are neither. And we do express our emotions. We just do it differently. I may not smile at you, but I might turn my body toward you and uncross my arms. I may not kiss you, but I might do all the house chores that day. I’ll never write a love note, but I’ve been in a stable relationship for 17 years. I may not call you a jerk, but I might kick your desk. And if I am really really angry I might go to the gym and do six rounds of sparring in the ring.
We also may not point at or bring objects to share with others.This is a hard one. Reasons for this range from being distracted by what we are looking at to being afraid to share with you because we are not really sure how.
Another constant challenge is that we often inappropriately approach a social interaction by being passive, aggressive or disruptive. Or utterly confused. How well we deal with the situation and whether we are passive or aggressive or disruptive will largely depend on how we are treated and how much help we had. Most of us do not have the ability to note the dozens of social cues all of us produce daily, open palm or fist, frown or smile, that the rest of you note subconsciously and adjust for, so we are going in unprepared and “blind” so to speak. Then there are our various quirky patterns of behavior.
Let’s start with those repetitive movements, such as rocking, hopping, spinning or hand-flapping, or may perform activities that could cause harm, such as hitting ourselves lightly on the head, face, arms, or upper thighs. This is called “stimming.” That’s self-stimulation. It’s how we ground, focus, or comfort ourselves. I need to clarify here that this is not something we do all the time. In fact, as we grow older it often grows rarer or more subtle. We may still flap our hands, but we might camouflage the gesture – by tapping rhythmically on a desktop for example. Or we might hit ourselves very lightly in the head once. And we may indulge in all of these behaviors or none of them. I stim by touching different textures with my fingertips and tracing the surface lines. I only curl or rock if I am in a state of really severe agitation.
It is also important to remember that female autists may show different characteristics from male autists, and this includes how we stim.
Another biggie is our specific routines or rituals and how disturbed we become at the slightest change. Well, routines are safe and they are easy to remember. We feel more confident and more prepared if we can function in our routines and we are less able to adapt. How well we deal with something new depends on the individual and what therapies he or she has had. For us, rules are rules are rules. They are immutable and as permanent as any Newtonian Law.
So a younger less experienced autist might very well respond poorly to something as apparently simple as being asked to move to a different desk. To him his desk is his desk as Mt. Everest is Mt. Everest to you. You do not expect to hear someone has moved Everest on a whim, and the news would cause you some serious shock as you attempted to process a seeming impossibility.
Within the autistic framework, rules — such as where we are to sit – are set things, as set as the Himalayas, and telling a child her desk has been moved will result in the same kind of shocked reaction as my moving Everest would for you.
And the child may resist the change. Not out of anger or defiance or rudeness but rather out of a sheer inability to process the new order of things. The change causes pain and confusion and requires time to sort out – if it even can be sorted out.
Punishing one of us for this makes no sense. Nor does telling us to “get over it.” No more than telling you Everest is now in Paris so get over it would be helpful to you. That said, we are capable of adaptation, but it takes time and patience. This is something to remember if a child seems to completely “lose it” over a new locker assignment.
What helps with this is simply explaining why you are making a change. If you offer us a rational explanation and show us the thinking behind the new codex of rules then we are more likely to accept the situation. So if you tell us the new desk allows us to hear you better or the seats were rearranged because someone new was added to the class and you wanted the kids arranged boy/girl or alphabetically or whatever, we are far more likely to sit in the new seat with a minimal of fuss. And anyone who knows one of us can tell you we often move constantly.
I do not live in your world. I am overstimulated all of the time. People like me compensate for this in movement. Those of us with a better grasp of the social conventions can sometimes regiment our behavior for a certain period of time within certain environments – a trait characterized by apparently too soldierly or too obsessive as we overcompensate – but eventually something will give.
I can be “normal” for about four hours. After that it is soft fuzzy clothes, soft music, and a rest. For those on a different part of the spectrum it might be a lesser period of time with a sharper recursive bounce back. Say an hour of class and a screaming meltdown in the playground.
Another frequent complaint is that we are “uncooperative” – this one harks back to rituals. It’s not that we are uncooperative; it is that we are locked into our patterns and you want to change the pattern. We have serious problems with that sort of thing.Sometimes we have problems with coordination or have odd movement patterns, such as clumsiness or walking on toes or odd, stiff or exaggerated body language. Our spatial relations and proprioception tend to be way off. Your body tells you where your feet are. We tend to have to look.
And yes, we can absolutely get distracted. We tend to become fascinated by details of an object, such as the spinning wheels of a toy car, but still somehow miss the larger picture of the subject. This is a classic case of too much information. We see lights, motion, colors, textures, and details… and it is sometimes very difficult for us to pull out and see the bigger picture. If I am looking at a tire and you are talking Nascar, then sorry, my friends, we are not talking about the same things, and you probably will receive a blank stare. Sometimes you can pull us back, but in small stages, wheel to paint job, paint job to car, car to speed, speed to racing, racing to Nascar — then you might get a smile.
Also, we may be unusually sensitive to light, sound and touch, yet do not notice pain in the usual fashion. Our sensory regions are huge — and for the record we do feel pain — the problem is we have trouble localizing it. This is because our body awareness tends to be so low that a cut finger can equal a hurt hand.
A lot of us do not engage in imitative or make-believe play. Since our world is literal and sensory and we feel far too much information is being offered to us almost all of the time, tell me why we would feel a need to manufacture further stimuli? It’s not that we can’t. I rather obviously can. One of my students also writes plays. I know of one autistic filmmaker and one autistic actor. It’s just that this is not something most of us feel a need to do. The exception tends to be those of us who use creativity as a form of externalization. “This is way too many words – so I think I’ll write a book.”
The child autist may become fixated on an object or activity with abnormal intensity or focus. “Abnormal” compared to all of you, perhaps. But tell the truth, now. In American culture we have many euphemisms for certain people who do this and are our heroes. Euphemisms like “Finding flow,” “Hitting one’s stride,” Finding the groove,” “Having one’s game on.” The truth is this one is only a problem if the outer world adjudges it to be so. If one is hyper-focused on writing in math class, for example, then it becomes an issue and one that can be linked all the way back to the inappropriate social reactions problem.
He or she may have odd food preferences, such as eating only a few foods, or eating only foods with a certain texture. This is another stimulus issue. It does commonly manifest as food behaviors but there are others. I hate having tags in my clothing. I love fuzzy blankets. My Godson prefers cold things to hot things – and this, sadly, includes pizza. And it all comes down to the fact that we sense things differently than you do. To you it’s a pizza, steaming hot cheesy delight; to my Godson it’s a mass of super chewy dough with slimy snot-like stuff on it that burns his mouth and gets steam in his eyes and smells awful… unless it’s cold. So if you have a student who won’t write in pencil ever, try asking why, rather than sending him or her to the principal’s office.
Some of us show these characteristics in less obvious ways or don’t exhibit them at all. We all have different habits.Some of us talk continuously and in great depth about one topic ad nauseam. We don’t care that you don’t know what a glial cell or a coprolite or a narrow gauge track is, or that your eyes are glazed and your jaw slack and your only vocalization has become, “uh huh” or “how interesting.” We were told to talk. People talk. We are talking. Sorry.
We also tend toward limited or inappropriate social interactions – inappropriate age behaviors are common.
We have a tendency now and again to talk with a robotic voice or indulge in repetitive speech. It’s called echolalia. We subvocalize, too. If you say something important, don’t be surprised to hear me repeat it.
And we have all kinds of challenges with nonverbal communication (gestures, facial expression, etc.). I can stand up here in front of you today only because I have 20 odd years of social, kinesiology, body language, proprioceptive and verbal therapy under my belt. And it’s purely intellectual – rather like piano playing. Piano playing is not innate; you learn it, and when you are sick or tired or drunk, your skills will drop off. I lose my social skills when I get tired or am sick.
To add to the social faux pas list, we may have a tendency to discuss ourselves rather than others, although this is not exclusive to people on the spectrum.
Then there is our inability to understand social/emotional issues or non-literal phrases, idioms, or jokes. Joking and active humor are actually both very social actions and require an ability to read a room or time a remark in just such a way, a skill most of us do not have.
Even so, please don’t tell me you are going to knock off for the day if I have not had my morning cuppa, because frankly, my brain will go how does one knock what off for what reason for a day? You are “off the clock”? Why were you on it in the first place and how’d you get up there and isn’t it rather small? You might want to remember all of this. It means the student who asks you a question like this is not being a smart butt — he or she is genuinely confused, and punishing them is only going to make a bad situation worse.
Some have an obsession with specific, often unusual, topics – for me those topics just happened to be neurology, body language, and social manipulation. (And steam trains.)
For another it might be lizards, or jello, or the color blue, or why we should all stay away from cars or that polo shirts are the only real shirts on earth or video games or Ireland.
Remember that for us, all of this is an intellectual exercise. Remember the pianist? Well, what if I asked him to dance and sing and maybe catch an apple all at the same time. Harder, yes? Very few people can pull off that level of legerdemain but we’re expected to do it all the time. Talk coherently, look you in the eye, control my feet, control my hands, and intelligently field any questions you may be asked, oh yes, and smile now and then. Something is going to slip.
Which brings us to another big one. Many of us are lousy liars. We tend to be blunt and outspoken and to have boundary issues especially if the boundaries are societal ones. Things come out of our mouths at times. Many a parent has come to have problems with us blurting out, “Mommy look at the fat lady. She smells.” Yes, inappropriate. But why? Because our socio-cultural rules say so. We are not supposed to say these observations for reasons that make no sense to us, and that causes problems. I once got in trouble as an adult for telling a man his coworker told me his wife was cheating on him. Inappropriate? Oh yes. Absolutely. But I was not considering what the revelation would do – nor did it occur to me the coworker was lying – I just did not want the man stuck with a cheating wife. Chaos ensued. And I got into trouble. No surprise, right?
And if I had thought it through, utilized all my resources, it would not have happened. But with kids, these things are bound to happen. You might as well just expect them. Some of us also have memory problems, formative, episodic, and long-term. So that does not help much either.
All that duly noted, I am going to say this again. We are all different. We are not all Rain Man, nor are we all Sheldon Cooper. And how we vary varies.
But maybe this little talk has given you some idea of what to look for. I hope so, it may save a life… and earn you that metaphorical jersey.
Image via Thinkstock.