mom with son on her back looking at a waterfall

To the Mom Who Wrote 'I Still Carry My 5-Year-Old Son'

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To The Mom Who Wrote “I Still Carry My 5-Year-Old Son,”

I still carry my 7.5-year-old son.

We should be friends. We carry our sons for different reasons, but the responses we get are similar. And, like you, I don’t really care what other people think, but…you know… sometimes you just wish people had the whole story before they judge you.

My son is not a bolter, though he’ll run into traffic if startled by a loud noise. He will not regularly let me hold him, or even hold his hand, so my best defense when we are near traffic is to put myself between him and moving cars and never let my guard down.

No, I don’t carry him for the reason you carry your son. I carry mine because he’ll reach a point of exhaustion and be unable to walk on his own. Sometimes this can happen after a long time out and about, but sometimes it can happen after a short time. You can’t see his low muscle tone and poor endurance, but I’m here to tell you he’s got both of those. With great periods of intense, physical exertion comes the antithesis, and when he reaches his low points he’ll fold himself up on the ground and completely retreat within himself. Sometimes, the world just gets overwhelming regardless of his activity level and he simply cannot function. This is what takes my breath away, this complete withdrawal from the world around him. What am I to do? Sit at home and never go anywhere? Abandon an activity we may be invested in? Maybe. But we’re not in a position to do that.

So, I pick him up and carry him. This is me carrying him on a hike the day after running a marathon:

mom with son on her back looking at a waterfall

At the time, one year ago, he could still squeeze into a baby backpack (safety rated to 70 pounds – there are no products I could find that are actually intended for his height and weight, much like finding diapers to fit a 6-year-old). His mid-back is where an infant’s head would be, so though the way I used it is not as it is intended, at least I was able to distribute his weight enough to comfortably make it through our hike (by the end he had fallen asleep).

A year later, he is taller and now 58 pounds. This was us just last week:

mom holding son

When we stopped for a bathroom break, he said, “I wish you had the strap thing.” I knewhe meant he wished he could be on my back instead, so we switched positions:

mom giving son a piggy back ride

Look. Look close.

This is not a lazy child. He is deadweight in my arms, with his head resting on my shoulder. Sometimes he’ll put his face in my neck and breathe in my scent. This is not a burden. This is a gift. It’s in these moments that he allows me to touch him. This is how he shows me love, how he tells me, without words, that he needs my help. Even when I am carrying him because he refuses to go to school, he’ll go into my arms and put his face on my skin and inhale and I think ah…this is peace. And, because reaching him can sometimes be so, so hard, I feel proud when I can finally offer him something he needs.

So, I carry him.

I’m also proud of myself for being physically able to lift and carry him for good amount of time. Like you, mom of the 5-year-old, I worry I can’t sustain this forever. I started CrossFit a year ago to become a stronger runner but quickly realized a greater purpose. While most at the gym are there to become stronger and fitter (and I have those goals too), I am there to prolong the amount of time I can carry my child. I know I can comfortably squat more than he weighs (I could push press him too if needed, but just barely), and that should buy me years of, at the very least, piggy back rides. I’m fairly certain the 20-somethings next to me are not wondering how the weight on their bars equates to the weight of carrying another person. Yes, he is going to get taller and older and it will get more awkward, but as I wrote a year ago… if my choice is to make things accessible for my son or not, well, there is no decision to make because the answer is easy.

So, carry on Mama, carry on. You are not alone. I’ve got two and a half years on you, and I’m not ready to put my son down yet either. I will carry him as long as he needs, as long as I can. Because, as you already know, if you think the need to protect your children is strong, the need to protect your children who cannot protect themselves will make you dig deeper than you ever thought you could.

Carry on…

Signed,

Another Autism Mama Just Carrying Her Child Through Life

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When a Reporter Asked a Mom If She Hopes Her Son's Autism Diagnosis Is Wrong

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I came across a video on YouTube the other day during one of my many research missions. The lighting was poor and the camera angles were even worse. It made me a little nervous at first since you never really know what will pop up during a search, but the caption insisted it was an “interview with autism parent” so I kept watching. On camera was this person, who I can only assume was a reporter, and he was interviewing a mother with a little boy newly diagnosed with autism. He asked if she still had “hope” that her child might not be autistic since he was still so young. “You know,” he said, “maybe it’s possible the diagnosis was wrong. You can’t lose hope.”

I don’t remember what that poor young mother said because for a split second, I froze.

Hope? What hope? The hope that Noah is not autistic? That his diagnosis is wrong? I don’t have that hope anymore. But should I?

I remember when one of Noah’s doctors told us, “This isn’t something children grow out of.” I knew then and accepted he was autistic, and life would probably not be “normal.” (For some reason, that word really bothers me.) At that point, I stopped looking for other answers. Maybe I shouldn’t have stopped looking. Maybe I only heard the answer I wanted to hear — the one that told me I was right. I accepted his diagnosis, just as I accepted the beautiful birthmark on the side of his ribs.

Am I supposed to have hope for a day when Noah will walk through the door and not have autism? Hope that he can walk in and talk to me about his day and all the new friends he made so easily at school or how he made the football team or how he tried out for the school play? Maybe I should even hope he will get his heart broken by some beautiful little girl because, as much as that would hurt, it would mean he was “normal.”

Before I watched that interview, I might have said things like, “I know Noah is autistic,” “His mom knows he’s autistic,” “We all know.” We were certain about this autism thing. And we didn’t think that was a bad thing.

But while I watched this video, the question about hope for some reason made me stumble in my supposedly unwavering certainty of what I knew. I realized hope and certainty are different, and each one brings their own comfort, but too much of either is unstable. And I was off balance. Maybe I had too much certainty and not enough hope. But this was the same certainty that freed, if not urged me, to preach about autism and enlighten everyone around me a couple of weeks ago in a little store in town, and now it shifted beneath me. And, once again, I’m faced with all these doubts and misgivings about everything I’ve done or thought in the past. I am second guessing every decision I’ve ever made. Is Noah really on the autism spectrum?

On top of that, I fear I’ve lost hope. Isn’t being hopeful a good thing? Shouldn’t I have some of that? I mean, it’s not like I don’t have all kinds of hopes for Noah — of course I do. But now I’m asking myself if they are the right hopes. Is there even such a thing as right or wrong when you’re talking about hopes or dreams? Maybe my hopes are just misplaced, or even worse, naïve. But, what am I supposed to be hoping for? Normalcy? Whatever that is. Should I be hoping for a “cure”? Or a different diagnosis?

And then I start thinking:

Why is all this getting to me so much?

I hate when I start doing this to myself.

I needed to clear my head of the fog that had taken over. I felt like I had most of the answers I needed just a week ago, but with one question on a bad YouTube video, I questioned everything and knew nothing. Where was the certainty, the confidence, the fire, I displayed at that little store? Was that now being replaced with doubt, disguised as hope? I needed some of that fire back, but it felt like it burned down to just a few smoldering embers and I was desperately trying to ignite it.

I needed someone to help me fan the flames a little. To stoke my confidence. I had to turn those embers into the raging fire I once had. I needed someone who knew Noah as well as I did. Someone who is familiar with autism. I went to the most logical person I could think of. Someone, the only one, that could possibly love Noah more than I do. His mommy. Her’s and my husband’s are the only opinions about Noah that really matter to me anyway.  She spends more time with him than anybody so I started off by asking her if she ever thought Noah was misdiagnosed. If she ever thought maybe the original diagnosis was wrong and there might be other things we should be looking into. She turned to me with a look in her eyes that told me she had not only thought about this exact same question before but that she was confident with her answer, and she simply said, “No, I know.”

Just hearing her say it lifted all the doubt I had.

She knew.

Just like I knew.

He is autistic.

OK, so that was one question down. She didn’t doubt the diagnosis.

But, another question still lingered. Did she still have hope?

But, hope for what? Normalcy?

Before I could figure out how to ask her (and what I was actually asking) without using the words “lost” and “hope” in the same sentence, she anticipated my question and said that she had stopped hoping that Noah would one day be “normal” too.

She also questioned what “normal” really means, though, and wondered if that’s what we really wanted, anyway. (That’s my girl.)

And then, in true Sara fashion, she told me what she does hope for. (She’s always been the glass-is-half-full kind of person.)

She hopes he makes meaningful connections with good and honest people.

She hopes he can bring out the good in the people around him and that they enjoy being with him.

She hopes the light that shines in him so brightly for us will shine just as brightly for everyone else.

And she hopes he can find his place in this big, cruel, overwhelming, beautiful, intense world.

But, perhaps most importantly, she just hopes Noah is happy.

Happiness. It is such a simple thing to hope for. And it’s the same hope shared by all mothers.

It touched me deeply to see the determination in her eyes to make “happiness” happen for her son.

And I know she will.

I guess the lesson learned here (because we always need to find the lesson, right?) is that my family hasn’t given up hope at all.  Our hopes are based on the reality that Noah has autism. Some of them may be just a little different but, fundamentally, they are  the same as every mother and grandmother in the entire world.

Sure, we hope he has girlfriends and joins some club in high school and then, someday, we hope he finds a good job. But mostly, we hope he finds

Happiness.

Acceptance.

Confidence.

We know our obstacles will be different from other people’s. But we’re prepared for that. We will support each other. We will be there for each other. I have faith in my family, and I have faith in God.

For us, normal will look different, too. It will be filled with irregular things like “stimming” and therapies and IEPs and medical evaluations. And possibly a naked little boy running around the house. With his eyes closed.

But we’re OK with that.

Normal is overrated anyway. It’s boring. To tell you the truth, during this process, we figured out that we probably weren’t very normal to begin with. If you look closely enough, nobody is.

The bottom line is this: All the questions and all the second guessing I put myself through is pointless. At the end of the day, all I can do is my best.

And trust myself. have to trust my gut and stop allowing other people’s opinions to influence what I believe to be true.

How many times do I have to remind myself of that?

If, in the end, I was wrong, well, I’ll deal with that guilt when it happens. As long as I know I am doing my best right now, right this minute, that’s all I can do.

In the meantime,

Noah is happy.

Sara is happy.

The rest of my family is happy.

We are all living our kind of normal.

And that’s everything I’ve ever hoped for.

Follow this journey on GMaw and Noah.

Image via Thinkstock.

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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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