What May Be Happening When an Autistic Person Appears to ‘Go Somewhere Else'

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Here’s a riddle to solve: I am not an island, and yet I am surrounded by water on all sides. What am I? I am just a person, swimming through this vast ocean that we call the universe. Einstein himself describes the passing of our lives as a river, and an ocean current keeps the features of that metaphor. G.W. Swain says that autistic people can be considered the birds in an ocean life system, holding their breath before returning to the surface for air, then diving back down again.

I want to use the premise of “no man is an island” and the ocean analogy to explain something that very few people have been able to shed light on from an outside perspective – the detached, unemotional-appearing nature of autism that often features in autism awareness films to dramatize the condition. Dramatizing is perfectly fine of course, but one should consider its limitations.

The apparent lack of emotion and detachment is not who we are. It is just an image that is projected on the outside. Rose King spoke at a TED event and famously said that there is a second, private world for autistic people, separate from the one we all share. It is here that emotion, attachment and most processing takes place.

We form attachments like everyone else. Imagine a boat on the surface, connected to the sea floor by an anchor. This connection is a hand guiding us into the shared world, but it connects people and places to our inner world as well. And that world is often not shown on the outside. For nearly everyone across the spectrum, there tends to be a difference between the world we perceive and the world we are able to respond to.

Please remember, we have feelings just like everyone else, and we want to express them. What value does any emotion, positive or negative, have if it remains inert in the mind? If anything, the stigma surrounding autism makes it more difficult to express emotions. We all create a reality together by letting emotions from our minds into the wider world beyond. But how can we be expected to add our emotions to that reality if we are regarded with suspicion and fear when we process them in the way that works for us?

When we in the autistic community appear to “go somewhere else,” that’s often what we’re doing. We’re going to a quiet place within to listen to the emotions and process them. So don’t be afraid of us if we look distant and removed. We just have to go somewhere a little further out to truly experience that which makes this world, this ocean, worth sharing: intimacy.

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Why I Love Traveling the World as Someone on the Autism Spectrum

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I am on the autism spectrum and have always loved traveling. When I was a little boy, my first time on a plane was flying to Disney World with my father.

Traveling on the autism spectrum may be easy for some individuals with autism and difficult for others. Some may be scared of traveling, flying, bus rides, trains, etc. For me, traveling at such a young age gave me the experience I needed in case I ever wanted or needed to travel when I got older. Now that I’m in my 20’s and have extra money to do it, I love to travel.

I’ve been everywhere. I went to Disney World a few times, including a visit there with my buddy in 2015. I’ve taken bus trips to New York City. I went to Las Vegas, where I saw Shania Twain, which was the greatest moment of my life. I hope to visit many more places as I get older, including a few visits to California, back to Vegas a few more times, and many more states in the US. I’d even like to take a trip to Canada, as a lot of people I admire in the entertainment business are from Canada. I’m proud of how many places I’ve been to in only 25 years — including one trip overseas.

To all of you on the autism spectrum who are afraid of traveling or want to travel, don’t be afraid. Sometimes it’s hard because of the sensory overload, but I take deep breaths, stay calm, and don’t panic when under pressure. I go to bed at my usual time and make sure to have downtime when needed.

I recommend picking destinations based on your interests. My choices are based on pop culture, sports, Disney parks and other major tourist attractions. I pick places to eat where I know I will like something they have on the menu.

I’m so glad I was able to start traveling at such a young age. I can even travel without the support of someone. When I went to Vegas, I navigated my mom and I through the airport because she didn’t know how to do it. That made me proud.

Traveling to other places is a privilege, and really exciting to do. I believe it’s important to get out there and travel the world while you can. I’m grateful to travel any chance I get.

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How I've Made Progress in My Love-Hate Sensory Relationship With Socks

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Socks.

It might be an issue more associated with sensory processing disorder rather than autism, but I think it’s also related to autism, because we often don’t explain the discomfort to the people around us.

We may not know you don’t feel the same way we do about socks. Some of us might believe our behavior should be self-explanatory, because socks just suck that much. I have very early memories regarding the unpleasantness of socks. They felt like fiberglass burning into my ankles, and the seam was like a large lizard wiggling around on my toes.

When I was a baby, my mother liked to dress me in socks with lace trim. I hated lace more than anything. Thinking about those socks makes me itch. Nothing could ever make them feel right. Looking around me, everyone had socks. I thought it was unbelievable. Why on Earth would anyone put up with this much pain?

My mother said it was to protect my shoes, because shoes are expensive. It was a logical enough explanation, but as I got older I remember rubbing my feet and ankles raw by pawing at my socks.

Wet socks and wet clothing have always been impossible for me. My mother once asked me to put on wet socks. I can’t remember very clearly what happened after she asked that question (perhaps I had a meltdown), but I feel like the situation ended with vomit.

As I got older, I started picking my own socks at the store. Ankle socks with no seam in the toe were my favorite when I could find them on sale. I had expensive taste in socks. If I can’t find socks without a seam, I prefer ankle socks with a seam on top, but they have to be soft.

I tried wearing shoes without socks. Most of the time I ended up with blisters on my tender feet. My balance is not the best, and I am a bit clumsy. I imagine my feet take quite a beating when not protected by socks.

Flats were great, until my feet began to sweat. Pools of sweat feel like oceans in my shoes — it is almost as bad as wet socks.

I try to stock up when I find a type of sock I like. If a company changes their socks, it will take me a while to get used to them.

Nothing is more annoying to me than a sock problem. The distraction is so intense, it becomes hard to think about anything else without stimming. Maybe that is why I went barefoot so much as a child. I loved the feel of warm, dry grass and hot asphalt on my feet.

I don’t run around with my shoes off anymore. Now that I’ve found socks that feel nice, I prefer not to feel small things under my feet. (As an adult at 125 pounds, my feet hurt more when stepping on objects than they did when I was closer to 60 pounds.)

Even now, there are some sensory days when I just can’t handle socks. If that happens, I don’t wear them. It’s that easy. It is not fair that I put myself through the torture.

Itchy socks take away my valuable spoons. I need those. They are mine.

I’ve been wearing socks for over 30 years now. It has taken me a long time to go from hating socks to loving socks.

Baby steps. Progress is progress, no matter how long it takes.

Image via Thinkstock.

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I Wouldn’t Change a Thing About How We Celebrated Halloween With My Son With Autism

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If I could do my life over, I’d be a party planner.

There are few things I enjoy more than preparing a celebration, like the Halloween party for children with special needs I led for our township last weekend. I spent weeks arranging details for crafts, games, decorations and snacks so the event would run with ease. Thanks to a host of generous volunteers, I think it did.

Celebrations with my own family, however, didn’t always turn out as planned. The blueprints for gaiety in my mind were rarely executed as intended by Daniel, my little boy with autism. He had his own ideas.

Take birthdays, for example. I strove to make them festive occasions in our household, involving favorite meals, helium balloons and a musical birthday plate for the guest of honor.

Daniel, however, was unimpressed. One year he actually developed a physical aversion to birthday cake. He wanted no part of the homemade confections brought forth for other family members, shoving his slice away with the back of his wrist, lest the offending substance touch his bare hand.

Undeterred, I concocted for his own birthday a dessert comprised solely of Daniel-approved foods. When the big moment came, he regarded the lopsided, cake-shaped mass of whipped cream and Oreos with a striking lack of enthusiasm, but deigned to blow out the candles and accept a slab without bolting from the table in horror.

I nearly wept with joy.

Halloween, on the other hand, was one celebration I could count on to at least resemble the typical-family ideal I aimed for when my children were young.

Daniel learned quickly that orange decorations meant a trip to Didier Farms, where he opted without fuss for the first pumpkin he saw. He enjoyed the jack-o’-lantern creation process, squeezing the slick pulp between his fingers, planting the votives firming inside the hollowed shells, then sitting outside, arms crossed and focused, to study the flickering candlelight winking from the pumpkins aligned by the door.

He tolerated every costume I devised for him, from baby cow to cowboy, green M&M to white, floaty ghost. He expressed no preferences, but he never balked at my selections, even the regrettable Mr. Potato Head ensemble of 1997, a choice bitterly scorned by my daughter, which I’ll never live down if she has anything to say about it.

Daniel didn’t mind it, though. He marched out the door, clutching his plastic pumpkin with enviable nonchalance, touring the neighborhood with his dad and sister, who swallowed her shame and behaved with typical loyalty to her little brother.

I see them still, their eager, costumed figures heading down the sidewalk as dusk settled in with Natalie holding Daniel’s hand protectively in her own. “Say ‘trick or treat,’ Daniel,” she coaxed as each door was opened. “‘Trick or treat!’” Sometimes he’d utter a proximation of the phrase, but more often just grabbed for the goods while Natalie issued a thanks for both of them before hurrying to the next house in line.

Described later by their father, Jeff, who guided them while I manned our own front door, these scenes are as vivid as if I’d been standing beside them: the warm glow of light spilling from doorways onto their expectant faces, Daniel reaching without fanfare into the offered bowl, Natalie gently coaching him, their unique bond deepening, all on its own.

I couldn’t have drawn a more perfect picture if I tried.

In the blink of an eye, Natalie was spending Halloween with friends, and Andy, her and Daniel’s step-father, assumed trick-or-treat duty in the new neighborhood we moved to when Dan was 9.

He wasn’t a little boy anymore, but I wasn’t ready to pare down his Halloween experience, even if he showed no great interest in participating one way or another. Of course, I usually claimed the cushy job, parked at home by the front door while dispatching my husband to herd Daniel up and down the street.

This become a bit challenging as Daniel grew older, his abrupt behavior more startling, at age 11 or 12, to neighbors unfamiliar with his autism. People were sensitive to Daniel’s quirks, though, recognizing his differentness and treating him with tender, respectful indulgence. Few begrudged his mute grabs for candy or lack of thanks, which we supplied on his behalf.

But in just a few years, trick-or-treating held less appeal for Daniel. Having graduated to a more sophisticated vampire costume, he was nonetheless ready to head home after just a few houses, content to pass the evening peering over my shoulder at the children crowding our doorstep, now and then holding the candy bowl himself as careful selections were made.

He was growing out of the Halloween of his childhood, just like his typical peers. I only needed to follow his lead.

I knew what he was missing, though: The “Halloween Hoopla” extravaganza held each year by our park district; the haunted house teens from our church navigated together, shrieking in feigned terror; the noisy packs of adolescent boys, jostling down the sidewalk, eyes open for girls, collecting the loot they pretended not to care about anymore.

These rites of passage were not right for my son, but I mourned their loss just the same.

Daniel had his own game plan, though. He was satisfied with the handfuls of candy he swiped behind my back; the roasted pumpkins seeds he surprised me by enjoying, crisp and salty and warm from the oven; our talking candy bowl with the green motion-sensing hand that lunged forward as he reached, giggling, for another Tootsie Pop.

He didn’t regret the pages lost from my Halloween blueprint. He didn’t even know they’d been drawn, and that was all right with him. And so, in time, it became all right with me.

My kids have been out of the house for several years, but I still decorate it for Halloween. It reminds me of those simple, unguarded days, the celebrations that ran smoothly, better than I could have planned.

While publicizing last week’s Halloween party and recruiting volunteers, I often told people that I wish there’d been a party like this available when my son was young, a lower-key event where differences don’t matter and kids and parents can relax and enjoy the celebration in a setting tailored for their needs.

Yet this isn’t precisely true.

I’m thrilled to lead this event each year, providing an experience that seems to be appreciated by the community. But I wouldn’t change a thing about my own children’s Halloween experiences.

Those memories are pretty much perfect, just as they are.

Follow this journey at Good Marching: Experience in Autism and the Rest of Life.

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I Am Not a Person With Autism. I Am Autistic.

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Some people believe the term “person with autism” is a more respectful way to describe people like me. But the truth is, I believe that phrase implies that autism is something bad.

There is nothing wrong with me. You may find me socially “unacceptable” from time to time or notice that my way of thinking is different from your own. But different does not equal broken. In fact, I wouldn’t ever choose to stop being an Aspie, even if I could.

Many people, myself included, believe that autism is genetic. I truly believe that neurodiversity is a necessary part of human evolution, and Aspies have been around throughout our existence. Great minds, such as Einstein, Mozart, and Tesla are now thought to have been on the spectrum.

Society has a bad habit of only wanting to focus on the negatives. Can you remember the last time you saw a happy story on the news? How often do your favorite shows get interrupted to bring you information about something positive?

Google-ing Autism brings up pages and pages of results. It takes considerable work to find information about positive parts of autism. Our gifts are hidden online and in the media, buried beneath challenges and drama. You don’t often read stories about adults who “pass” (with exhausting effort) in society.

Every time I stumble across articles talking about finding a “cure” for autism or isolating the “autism genes,” my frustration and worry rises. Don’t these people realize they are talking genocide and eugenics?

Stop trying to “cure” me. Stop trying to prevent others like me from being born. There is nothing wrong with me or my genes. Just support me, and help us succeed in this world. We deserve to live happily just as much as everyone else.

This is why I am not a person with autism. I am autistic and proud of it.

Please understand if I am irritated when people who aren’t autistic try to govern what is best for us. Many of us are capable of advocating for ourselves and do not need or want a “cure.”

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Image via Thinkstock Images

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The Joy of Watching My Son With Sensory Sensitivities Enjoy a New Food

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My son N has always been a picky eater. No, scratch that. How about super-sensitive-and-guaranteed-to-refuse-any-new-foods? That’s a much better description.

It’s not just because he is on the autism spectrum. Part of it is probably the sensory defensiveness that can come under the autism umbrella and part of is it anxiety about new tastes and textures. I mean, this kid hasn’t eaten candy in his entire life! He couldn’t care less about ice cream or pizza!

I know, I know — he sounds like a 6-year-old who only eats healthy stuff. But this is way bigger than that. He accepts six foods, and those are the six food choices he’s been sticking to for the past four years. It’s a constant cycle of dosa-pasta-rice-pretzels-chips-fries. So no, not healthy by any means. And his dislike of non-preferred foods is so strong, he will actually gag at us eating a meal. It’s that hard for him. Eating at restaurants means taking his meal along with us, and he’s that one kid at the party who’s eating his little box of pretzels because he cannot stand the sight of birthday cake. Not fun for us and definitely not fun for him. And as he grows older and smarter, he now realizes how much control he has over what he puts in his mouth. New brand of pretzel? Not going to happen! Different flavor of the same chips? Ha ha you’re adorable, but nope with a side of nope.

When we were brand new to this, we did the whole “let him go hungry for a while and he’ll eat anything” routine. You can imagine how that ended. One hungry, screaming 2-year-old whose mouth was sealed shut until he saw us buckle and offer him some pretzels.

Since then we’ve tried many (smarter) ways to address this. Food chaining, offering him new foods all the time, smelling kit, using dry edibles for art projects, getting him to feed us, etc. Nothing has really worked sustainably. Some progress, but it is slow-going. And it really comes to bite us in the butt when he falls ill. He will absofreakinlutely not eat a pill or swallow a liquid medication. Once he was dehydrated after a virus and his pediatrician advised me to give him Gatorade and juice, and I laughed all the way home. Like, seriously, lady? Do you know nothing about my child after five years of seeing him? All I had to do was offer him Gatorade? Why did I not think of that before? Snort.

So that’s where we were until recently. You still with me? OK.

This past month, a bunch of his buddies had birthday parties at school. His teacher has been offering him bits of popcorn and chips (new brand) at every party, and color me incredulous when she reported that he licked a chip and a single piece of popped popcorn. I seriously did a comical double-take when she told me the news! On the drive home, I felt like rolling down the windows and yelling, “My kid licked a chip.” Might have gotten a few blank stares and some surprised ones, but that’s how ecstatic I was. And then this past week, he saw me snacking on some popcorn, so he walked over and watched me eat for a bit. I held my breath and tried to make it the world’s most interesting production of a person consuming popcorn. Sneaked a glance at him — he was still watching me.

Boy on bed, taking popcorn from someone's hand

Then yesterday, while I was going at the popcorn again (What? I like popcorn!), he actually put his hand in the bag and fished out a few pieces. I swooped in with the intensity of an eagle and asked him to lick one. And he did! Then at my urging, he put one in his mouth and swished it around a bit, grimacing the whole time. Spat it out, but didn’t gag! Cheering inwardly, I asked him to do it again, but he refused.

Later last evening, his Dad got him to do it again. And then — angels singing — he ate a piece of popped popcorn! And then another! Almost gagged, but the moment passed. I slept better last night than I have in ages.

And today, he ate popcorn almost casually. Twenty whole pieces of beautiful, fluffy popcorn. I counted out each one while his auntie handed it to him. We didn’t say a word, didn’t breathe too loudly. Just watched in awe as this 6-year-old boy ate and enjoyed his popcorn. We cried happy tears and hugged him while he smiled proudly. He knows what a big deal this is. He knows he’s been so brave to do this. And he knows it might get easier the next time.

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