Portrait of a young man, black and white sketch, colored paint strokes

What I'd Like You to Know About Those of Us on the Autism Spectrum

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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.

Right?

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.

And to complicate things further, some of us have co-morbid neurological challenges as well, such as communications disorders, dyslexia, dysgraphia, and dyscalculia.

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.

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10 Things I Wish the Entertainment Industry Understood About Autism

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It’s been almost 30 years since the 1988 movie “Rain Man” came out, featuring Dustin Hoffman as a character who was on the autism spectrum. At the time, it was one of the few depictions of autism in film. Since then more films, plays and television shows have been featuring the stories of fictional and non-fictional people with autism.

My fascination with this topic began when my parents started getting me involved in theatre to help me build on my communication skills after I was diagnosed with autism at age 4. Now as an adult, I’ve taken a role in helping bring a realistic portrayal of autism to these projects.

Here are 10 things I hope the entertainment industry knows when they are looking to feature autism.

10. Our autism spectrum has more dimensions than Rain Man. Growing up I was often asked questions such as “Do you share any similarities to Rain Man?” Many see Rain Man as the one-size-fits-all of autism. Today our spectrum varies; we have a variety of characteristics and abilities.

9.  We need to highlight girls on the autism spectrum, too. Many people still think of autism as a boy’s disorder and that couldn’t be farther from the truth. Boys are diagnosed with autism 5 times more
often than girls in the U.S., but that doesn’t mean their stories shouldn’t be highlighted. A great example of a film that looks at the life of a woman with autism is HBO’s “Temple Grandin.”

8.  Look at issues those with autism are facing today. Growing up I faced more than communication and social delays. While autism is characterized as a social and communication disorder, it can also include sensory, cognitive and motor challenges. There are issues about trying to find money to pay for supports at home and school, young adults with autism having difficulties finding employment, and trying to find a relationship.

7. Ask experts in the field of autism. Most importantly, ask people with autism to lend their support! Ask them about their stories, and even consider featuring their story in your project if you don’t have a central idea yet for what you want to do. Many people both on and off the spectrum would like to help. I’ve helped with four films focused on autism.

6. Understand that autism is a lifelong disorder. Consider featuring both children and adults equally. 50,000 children with autism reach adulthood every year. Showing the obstacles and successes they face throughout their lifespan is essential. Everything from early intervention to later adulthood services matters.

5. Nonverbal people with autism should be included in these conversations. A great example of someone who would be worthy of featuring is Carly Fleischmann, a 21-year-old woman who is completely nonverbal but communicates via her iPad.

4. Don’t try to push a character with autism into a project if it doesn’t fit into the storyline. As much as we want recognition, we also don’t want to step into a project that wouldn’t be an appropriate fit. Autism is one of the hot topics in the entertainment industry today, but coming into any project with sensitivity is important.

A few years ago I had an extreme fascination with the character of Sheldon Cooper from the CBS hit show “The Big Bang Theory,” based on many people’s beliefs that Sheldon falls somewhere on the autism spectrum. I wrote a blog titled “Why Our Autism Community Loves Sheldon Cooper.” Even though he’s not on the autism spectrum, because it may not fit into the storyline of the show, he’s still very relatable for our community.

3. Once your project is completed, consider the needs of audience members who have autism and may want to come out and see it. Countless groups are doing sensory-friendly events for movie theaters, Broadway plays, etc. Check out websites such as AMC Theatres Sensory-Friendly Initiative and Theatre Development Fund’s Autism Theater Initiative to learn more.

2. Educate if you can! What can the audience learn about autism by watching your project? One of my favorite teachers of all time said, “Think with the end in mind.” What do you hope people take away from your project as part of the overall story? If you can educate about autism and include organizations that are helping those with autism, like Autism Speaks, that’s even better!

1. Having more projects focused on a realistic portrayal of autism will help educate our communities. This is the most important thing I wish you knew. Ignorance is just a lack of awareness. With your support of our community, we can foster diverse education and acceptance for all with autism. You can make a world of difference. Never forget that.

A version of this blog originally appeared on Kerrymagro.com.

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On 'Escaping to My Own World' as Someone on the Autism Spectrum

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I live with an autism spectrum disorder. That is, I wander an invisible maze with walls most people can walk through but I can’t. Sometimes, because I’ve managed to find a place in life situated along the devious routes I must travel, I forget the walls. And then, bang! I slam into one and stagger back, dazed, while my supervisors and colleagues wonder what the problem is.

Times like that are periods of deep depression for me. Maybe they shouldn’t be, but they are. They bring home how very carefully I must arrange my life to make it from one day to the next. How many opportunities I’ve missed. I feel hopeless, helpless, inadequate. I feel alone.

But, sometimes, I fight back. I revolt.

Several years ago I got in some hot water. The details are rather dull. There was a conflict between my idealistic conception of work to be done and conscientious attempt to do it, and the practical, political realities of modern life. It’s a common enough story for someone with my diagnosis. Rebuked for trying to do my job well, and confronted as I had not been for some time with my social blind spots, I retreated into myself.

I collect. I arrange. I collate and cross-reference. Day in and day out, that’s what I do to survive. When I was a boy, I stacked or made patterns. Later, I studied biological taxonomies and mythical genealogies. I collected insects. I wrote histories of the future. I created alien races. At some point I obtained a doctorate in math.

These pursuits of mine are like breathing or eating. I can’t live without them. When confrontation occurs, that’s where I fly. I don’t withdraw from my duties, mind you. Flight and desertion are different things altogether. Rather, my private withdrawal to a secret inner world gives me the strength to brave public life.

After the incident just referred to, which was only the last in a long line of similar occurrences, something snapped. This time, instead of making a temporary retreat, I set about the construction of an entire secondary universe.

And that’s where I go now when I need to escape the bright sights and shrill sounds and baffling bureaucratic quandaries that punctuate my life. Yes, I escape. I know the word has gathered a few negative connotations. True, escape can be the act of a coward. But escape can also be the act of a hero. Escape, you see, is a lunge for freedom. It’s a one-man revolution.

My collecting and organizing, once closed in on themselves, are now the acts of a demiurge, a world-maker. This isn’t withdrawal from reality because my universe is our universe, our universe as seen through my eyes. I’m not really creating a secondary world at all. I’m exploring the real world, trying to understand it and find my place in it. The anguish and confusion and frustration that would otherwise be locked up in my brain finds outlet there. It takes on flesh and walks the earth.

I took to setting these visions to paper. I painted. I wrote. Then one day a curious thing happened. I submitted a story to a magazine, and it was accepted for publication. It was accepted, and I got paid for it. After having thrown a million bottles into the sea, a response had washed up on shore at last.

Since then I’ve gotten a number of other stories published. I’ve written two novels as well. They are apparently too idiosyncratic to be marketable. So I’ve self-published them, with my own illustrations, because I have only so long on this earth. It’s so refreshing to do this because, to my mind, at least, I’m not doing it for myself, but for the enjoyment of others. For once my efforts are directed toward someone else.

Some readers have dared to enter my world with me. Not many, of course. And not all like what they see. It’s not always the pleasantest of places. But a few have found beauty in it, and that’s enough to make it worthwhile. Most of the people around me don’t know my secret, and I’m fine with that. It’s like having a secret tunnel I’ve dug, hidden behind a poster in my office.

Sometimes I ask myself: What am I doing? Where am I going? What meaning does it all have? At such times, I look to the tree. The tree does not ask questions. The tree grows where it’s planted. It gropes its way along lines laid out for it when it was only a seed, taking in the sun and the rain, but following its own inner logic.

That’s what we all need to do. Whatever our strengths, whatever our weaknesses. We need to flourish as what we are, and let someone else worry about what good it is. We need to have the courage to make our own universes and, in so doing, carve ourselves out a place in this one.

Image via Thinkstock.

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How to Help Me When I'm Having a Meltdown

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Recently, The Mighty asked individuals on the autism spectrum to describe what a meltdown felt like. This is Sarah’s response to that piece.

Since a meltdown is more than just the event itself, I decided to break it down to what happens right before, during, and after one, and add some advice about what you can do to help me if I’m having a meltdown. I also want to make it clear that my experience does not apply to everyone on the spectrum. While I’m sure some can relate to my experiences, they are not universal, as everyone on the spectrum is unique.

Before the meltdown: My meltdowns are often set off by an outside event. A lot of times, the event is something small — something that seems so minor, people don’t understand why I’m overreacting. But the thing is, the event that causes my meltdown is usually a “straw that broke the camel’s back” sort of thing. I might already be anxious and upset, for one reason or another, and something just sets me off.

On one occasion, my parents and I had tickets to a musical and were planning to have dinner beforehand. The problem was, I forgot to eat lunch that day. I was doing something or another and just didn’t realize what time it was until I realized I had to get dressed and we had to go. I thought I’d be OK because we were going to eat right away. Still, I was nervous because I’d never been to this restaurant before and I wasn’t sure if I’d like the food. So the worries were starting to pile up.

Then, on the way, we got stuck in traffic. So I was getting even hungrier, was anxious, and was now concerned about being late for the show. When we finally reached the restaurant, the lighting was dim and the music was loud. Every clink and clank of silverware and plates became deafening as I neared a meltdown. I immediately retreated inside myself and just stopped reacting to things. At first, my dad thought I was pouting, but I explained I was trying really hard not to melt down. Fortunately, I was able to avoid a complete meltdown. (Also, this may be because I was really hungry, but that was the best macaroni and cheese I’ve ever had!)

During the meltdown: If I can’t calm myself down in time, the meltdown starts, and it feels like a bomb is being set off. My body feels like it’s about to explode, and I begin losing control. I can no longer control my movements, and my body tends to kick, hit and generally lash out. Sometimes, I think these movements are a way of trying to protect the people around me by getting them out of the way before I “blow up.”

Some people can’t speak when they have meltdowns. That’s not the case for me, but sometimes I wish it were. While I’m still able to speak, I lose control of the words that come out. Unfortunately, my speech often takes the form of profanities, if it’s coherent at all. I’ll scream insults and obscenities. All the while, my brain is saying, “Stop that! You don’t mean it, why are you saying that?” but it’s no use. Once I hit full meltdown, I can’t control my body at all anymore. I feel like I’m trapped in a robot shell that’s out of control, and while I can observe what’s happening, I can’t stop it. I’ve screamed terrible things at classmates I barely knew, and lashed out physically at my parents when these happen. And, even though I’ve lost complete control when I do it, I have a really hard time forgiving myself afterwards.

After the meltdown: Even when a meltdown is over, it’s not really “over.” The best way I can explain it is it’s like getting burned (which has happened to me several times; I’m really clumsy, which can sometimes come with Asperger’s). Just because you take the heat source away, the burn doesn’t disappear; it doesn’t mean you can just move on. Now you have a wound that needs treatment. You feel completely raw. The pain isn’t necessarily excruciating, but you’re extra vulnerable to any additional pain or frustration. You need proper care and, most importantly, rest, to recover.

So, from what I’ve written, a meltdown probably seems super scary. It is. It’s absolutely terrible. So how can you help? Well, that’s the thing… you really can’t. For me, at least, the only one who can calm me down is myself. The best thing you can possibly do if you see me in the process of having a meltdown is to give me space and let me fizzle out. If I seem like I’m starting to withdraw, please don’t try to push me further. That’s not going to help anyone. And, please, do not try to hug me or offer me physical contact. This seems to be a common response, but it only makes me more nervous and upset. After a meltdown, once again, the best thing to do is leave me be. Be gentle with me and realize I’m still vulnerable.

Now, I understand this seems counterintuitive. So I absolutely do not expect people to know how to handle these situations. And I know it’s a lot to ask people to be easy on me when I’m insulting and possibly lashing out at them. I am not asking you to magically be OK with what I’m doing or forgive me for what I do. I’m writing this simply to help people understand what’s happening and why.

To sum up, I think a good meltdown analogy — for someone who loves video games as much as me — would be a Bob-omb. You know, those little bombs from Mario games that walk around and have eyes? When they’re walking around they’re peaceful and happy, often helpful. But once the fuse is lit? Stay away until the explosion’s over. That being said, don’t worry, I won’t chase you like a Bob-omb would!

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15 People on the Autism Spectrum Describe What a Meltdown Feels Like

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“Why are you freaking out?”

“Calm down.”

“That child having a tantrum just needs some discipline.”

“What a brat!”

“What a weirdo.”

People on the autism spectrum, and their loved ones, unfortunately hear phrases like these every day. Why? Because they often experience sensory overload when too much sensory stimulus is occurring at once. It can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s also associated with diagnoses like sensory processing disorder (SPD), chronic fatigue syndrome, fibromyalgia, post-traumatic stress disorder and more, although anyone can experience it. Often, a meltdown is the only way to relieve the building tension of sensory overload.

The outsider may perceive this as throwing a tantrum.

Let’s get a few things clear: a meltdown is not  the same as a tantrum, and people who experience meltdowns do not choose to break down. Every person has different techniques for preventing or getting through meltdowns. Different coping mechanisms work for different people. What universally doesn’t work? Judgmental stares, points and especially comments. But we’re not trying to call you out if you’ve ever mistaken a meltdown for a tantrum — we’re just here to help you understand the difference.

We asked autistic individuals in our community to describe what it feels like to have a meltdown. Hopefully their insight will help spread some understanding and empathy.

1. “It literally feels like my head is imploding. Building up to it gets overwhelming, but an actual meltdown is just like… like your brain is ceasing to exist. Of course, it doesn’t actually, but I lose control of my muscles and ability to talk, I can’t modulate my voice or really send any signals from my brain to my body to calm down. It’s as though my brain… as a last-minute thing, sends a bunch of energy to the rest of my body, but there’s no instructions for how that energy should be used, so it just goes all over and is out of my control.” — Shayna G.

2. “It’s like a volcano. It builds and builds, and it builds so fast into a big explosion and it is fire that destroys until everything is gone.” — Devra R.

3. “I feel trapped. I have a weird tension in my head or my arms I want to get out. Everything around me suddenly feels extremely real like I’ve just come out of the water, I feel all sorts of emotions all at once and I want to run away from them all. I lose sight of what is socially appropriate and start to say things I either don’t mean or something I’ve wanted to say deep down. Whenever that happens I end up hurting someone or confusing everyone. People think because I ‘only’ have Asperger’s I shouldn’t be able to have meltdowns, but I am. I know they’re not as “destructive” or as “obvious” compared to a meltdown my brother would have, but I’m still capable of having them. People tell me to ‘calm down,’ which only makes me feel more frustrated because I already know that.

Once the meltdown is ‘over,’ I can’t explain to others why it happened because it isn’t until later at night (or later than that) when I realize it was a meltdown. By the time I come to the conclusion, it’s too late. Others would have forgotten what happened or wouldn’t care. Either way I end up looking like some sort of ‘attention seeker.’” — Chi C.

4. “It’s like I’m spinning out of control — no ground, no air, no sky, just me and fear and rage and desperation. My bones vibrate, grate, splinter. My chest is hooked up to a vacuum, pulling through my chest. I wake up with bruises and cuts and scrapes from grabbing onto anything, everything that may pull me back to earth. My memories of meltdowns are usually erased by morning, and I can only remember vague feelings. If i dwell on those too long, it becomes too intense, and I have another meltdown. I’m not ashamed of being autistic. I refuse to be. Just because it shapes who I am doesn’t mean I have to let other people decide how it will. But God, meltdowns are indescribable. Too big for my small body. Too big for this small planet. Painful, like razor blades, not over your skin, but over your soul. Your entire being is twisted by an outside force, and when people say ‘it’s just a noise,” “just an argument,” they show they truly do not understand. And often, the solution is simple. Often, I’m screaming for it. Make the buzzing stop.” — Holly H.

5. “Uncontrollable, almost like Jekyll and Hyde. It makes me feel like someone or something flipped a switch in my brain and took over my body, abolishing any rational thoughts, reactions, and communication. The blood in my head pounds, and everything in it magnifies more than it seems it can hold or handle. There’s a small section of me in the back that recognizes what’s going on and wants to stop it, but it can’t override the system. My primal base and flight-or-fight is on high gear, so I end up instinctively isolating myself to get anyway from any other living energy form. Only then can it have the space to breathe to start to calm down eventually.” — Laura S.

6. “It feels like all the pressure that has built up in me (like a fizzy drink) explodes, and you can’t stop, and you lose control until all the pressure is out, and then you sleep to regain strength.” — Lauren H.

7. “I lose complete control of my ability to regulate my emotions — the ‘filter’ has gone, and I lose the ability to stop obsessing over whatever is upsetting me. Sometimes I have uncontrollable urges to throw things and make a psychical expression, but this decreases my ability to articulate the problem. A vicious circle. If I am scared rather than angry I will lose the ability to speak and engage with the world and will feel the need to hide in a space for hours. Always, exhaustion follows.” — Kym F.

8. “Scary, like an out-of-body episode. I lose my ability to think or process, and can only feel. And I feel everything. Every noise, every draft. I want to scream, and sometimes I do, just wordless screaming. And all the while I feel like I’m watching myself in third person, and that tiny part of my brain that is still capable of rational thought keeps thinking, ‘Why am I doing this? Calm down, control it!’ But I can’t control it.” — Tiffany D.

9. “For me personally, it’s like a huge, overwhelming tidal wave of emotion and sensory awareness, building up and up, before crashing down horribly. I’ll often break down crying or in anger or both — leaving people around me offended and/or confused. It leaves me completely washed/burnt out from head to toe, inside and out, unable to talk or sometimes even move. It can be a total shut down where I can’t speak to verbalize what I’m thinking, which can be several things at once. I need time and quiet space to come around, away from people, where I can engage in a favorite repetitive activity such as artwork/fiber arts which I find very calming and which helps me move past how I’m feeling to think clearly and function normally again.” — Kath S.

10.“I feel like I just want to be alone, and usually that’s what i do! I isolate myself either in my room or I go to the forest just to walk. When I tell my friends, they think I’m weird because I just don’t want to be with anyone.” — Kasper M. 

11. “It’s very intense and a build-up of extreme emotions all coming out at once. Sometimes, the only way you feel you can calm yourself down so I doesn’t last for hours is to hurt yourself because pain feels like a release of those extreme emotions.” — Kathryn B. 

12. “In my head it sounds like a hundred voices all taking at once and wanting to scream.” — Richard T.

13. “It feels like I can’t handle things anymore, and I can’t stop my reaction to it all. As if I’m no longer in control of myself. So I end up either crying and hyperventilating or both. I think about each problem I have, try to come up with a solution to it, can’t, and let out the emotions. I repeat this process until the emotions are out. Sometimes, I need something to help stop the process (stimming, a weighted blanket, etc.) or it will just continue to escalate. It’s not fun, and I don’t like when it affects others around me, but it’s also necessary sometimes to sort of ‘reset’ my system.” — Erin C.

14. “Just awful. Like no-one understands, everyone’s laughing or staring at you, and you’re just ‘making excuses’ or ‘making it up.’ What could happen next? I get arrested, or get hurt, or hurt someone else? Unfortunately, this does, and has, happened.” — Shaun U.

15. “It’s like a train that won’t stop! … Once it’s over, I feel emotionally numb. After a good night sleep I’m ready to conquer the next day!” — Jordan S.

Image via Thinkstock.

If you are on the autism spectrum, how would you describe what a meltdown feels like? Let us know in the comments below.

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How Demi Lovato's Message at the DNC Inspired Me as Someone With Autism

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Demi Lovato, a mental health advocate, spoke at the Democratic National Convention (DNC) this week, and she did not disappoint. The message she gave that really stuck out to me was:

“This is not about politics. It’s simply the right thing to do.”

Watch Demi’s entire speech here:

“What a wonderful thing to say,” I thought to myself. This is an important message for everyone in our country needing support, whether it be for mental illness, disease, disability, etc. Lovato then went on to discuss how she had access to the resources she needed for her own mental illness, but many Americans today do not.

Although I’m not living with a mental illness, I struggled as a child due to autism. However, because my parents were paying out of pocket, I was able to get the early intervention and support I needed to thrive. Now, as an adult, I speak as an autism advocate to our legislators about the need for autism and other disability legislation.

I’ve written before about Lovato speaking up for the cause, and I believe moving forward, we need more celebrities and advocates to start using their platforms to discuss these serious topics and help our loved ones. I applaud her for what she did and continues to do to be a champion for mental illness.

As she concluded, “every small action counts,” and we can never forget that. We can all make a difference.

You can read a version of this blog at Kerrymagro.com.

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