I Have This Thing Called Autism

Fourth-grader George Yionoulis made a video to help his classmates understand “why he does the things he does” because of his autism. The video is a compilation of photos and videos of George through the years, accompanied by a soundtrack of music he created.

“Let me tell you a little about myself. I have fun dancing, I have fun making music, I love to draw and make art, anddddd… wait for it… I have this thing called autism.”

George goes on to explain many of the things he might do in a given situation and why. He also talks about the tools (gum, headphones, focus) that he uses to help himself. The video is a wonderfully clear and honest look at George’s autism (His mom is quick to point out that, “This is just his own experience, and should not be taken as a blanket explanation of autism.”), and he invites his classmates to feel free to always ask him if they have a question about why he does something the way he does.

Although George didn’t talk until he was 3 years old, he’s got a lot to say now, and the video showcases both his talent and his sense of humor.

The Worries of an Autism Parent: Different Not More

Yesterday,  a fellow special needs mother, whose son was recently diagnosed with autism spectrum disorder, asked me a question. She asked me if there will ever be a day when she won’t worry. I attempted repeatedly to respond to this question, typing then erasing, typing then erasing. I didn’t know the answer. Who am I to say or know anything about anything? But I especially did not know this. This question has haunted me for the last 24 hours.

I don’t know. I don’t know if there will ever be a day that she won’t worry. The infinite, multiplying questions that come with an autism diagnosis are like rivers that part into dozens of streams that eventually lead only to an ocean of uncertainty. I don’t know. There is so much that I just do not know.

While I do know that my son is incredibly smart, I also know that there is a possibility that he will never be able to fully convey this intelligence to the world. What if he can’t connect with others the way that he can with me? What if he is bullied, taken advantage of, made into a spectacle?

What if he can never ask a girl to a dance, or tell a woman he loves her, or get married, or have children, grandchildren? What if something happens to me? What if it gets worse instead of better? What if I lose him again to another year of regression? What if he doesn’t come back this time? What if he never finds the words that are on the tip of his tongue? What if they stay there forever?

While autism comes with many questions, concerns, and challenges, it also comes with a bold and beautiful silver lining. Autism knows no cynicism, judgement, or cruelty. It knows no greed.

In the same way that my son doesn’t always understand questions, I know that he does not know malice. While my son may face bullying in his lifetime, I can say with confidence that he will never be a bully. While he may not be able to communicate with others as deeply as he does with me, we share a bond that much stronger because of it.

For every word he cannot find, there is a look he gives me that I wouldn’t trade for the dictionary. He may not respond to “I love you,” or give kisses on demand, but when I do get a kiss from him, there is not a kiss more genuine in this entire world. We face daily frustrations trying to communicate with one another, but after the confusion settles, and I am finally able to interpret his request, the look in his eyes is one you will see nowhere else. It is one of pure connection, gratitude, and contentedness.

While it may be difficult for me to explain to him concepts like time, for example, such as waiting for dessert or being patient through commercials, he knows a presence that I will never know. He knows the present moment in a way that we all should envy. While I may have to worry about him having a future career or marriage, I highly doubt that I have to worry about him embezzling, having affairs, or fighting with his brother over their inheritance. I may have to worry about the way the world treats him, but I do not have an ounce of concern over how he will treat the world.

There is an irony that come with autism. It is as if the gene that aids in communication, speech, and sensory intake lends itself to more important and fundamental human features. Just as our hands and feet get cold when our bodies choose to keep our blood closest to our most vital organs as a means of survival, it is as if autism chooses to pool its energy into the most valuable and moral aspects of humanity, while willingly sacrificing the priorities of the neurotypical brain.

In other words, what is important to us as a culture is not necessarily that which is most valuable to our species. Society looks at autism and sees a deficit, when in reality the real deficit is in our own neurotypical thinking. It is typical for parents to worry over their child’s future career and marriage, rather than staying up late, tossing and turning over their child’s future character and moral fiber.

While I still don’t know if there will ever be a day that this fellow special needs mom does not worry, I would bet that there will be a day when she cries tears of joy over a miraculously met milestone that she never thought she’d see, while on that very same day a different mother will cry tears of disappointment over her neurotypical child’s deceit or corruption. The point is, life is a trade-off. None of us are spared the worry we feel over our children and their futures.

The satisfaction found in parenting is not driven by college degrees and six-figure salaries. I know firsthand that those things do not bring happiness. As a parent, adjusting to an autism diagnosis means adjusting our expectations of what truly matters in this life, and aligning them with what is, perhaps, a more altruistic perspective. So while our children often need help adjusting to the world they live in, so do we. We also must adapt our conditioned brains into recognizing what is truly worth worrying over at the end of the day.

The satisfaction found in parenting any child is found in the pride we feel when we see our children do the right thing, tell the truth, help another person, accept others, and just love us back unconditionally. Today, I am not worried for my son in any of these areas; he shows me every day how to be a better human being. And while my neurotypical brain has convinced me over the years that things like eye contact and sarcasm matter, my heart tells me that character and authenticity are what really count in this lifetime, and if that’s the case, I’ve got a lot less to worry about than most people.

So, to try and answer my fellow special needs mom’s question, there are many things I still do not know, and a corresponding worry for each unknown variable in our life’s equation. I will probably worry about my autistic son every day for the rest of my life, just as I will for my neurotypical son. What I do know is that my worries are no more or less than those of any neurotypical parent. Allistic or autistic, that’s being a parent. The worries are merely different. And if our children have anything to teach us, it’s that “different” can be so much better than anything we ever could have planned for.

School Creates a Beach for Autistic Students

A school in Devon, U.K., recently converted its unused outdoor space into a beach. While there’s no ocean, the courtyard has been filled in with 23 tons of beach sand and populated with pails, shovels, and beach balls. Like a giant sandbox, the space also includes a couple of seated child-size diggers. There’s also a trampoline.

Staff at the Longcause Community Special School in Plympton wanted to create a space for their students—who have autism or other complex learning challenges—to learn and play. Although they’re not located very far from the actual beach, few of their students ever go there, due to a variety of logistical and/or other issues. So, teachers and teaching assistants, along with some student and parent volunteers, worked over the summer holiday to ensure the sensory-friendly environment would be ready for the new school year.

The children are already enjoying it. Teacher Toby Clark told the Plymouth Herald that the sensory area isn’t just letting the kids get outside; it also presents many learning opportunities. This includes working with shapes and writing in the sand. Many children also find it soothing to walk in the sand or simply let it sift through their fingers.

He went on to say, “This is a really unique feature and we are really pleased with it…It is great to see the kids enjoying it too. It was a gamble and we are so thankful it has paid off.”

 

I’m Autistic, and This Is Why I Dread Haircuts

I’m an adult autistic person and haircuts are terrifying to me. I find it very frustrating, to be honest, but today—September 5, 2017—I just got my haircut. Staff support and friends were there to help and even though I was terrified enough that I just sat in the chair with eyes wide-open in terror pretty much the entire time, I was able to get through it.

The minute I walked into the salon, I was overwhelmed by the smells of perfumes and makeup, and the sensation of knowing I was there for a purpose that would automatically trigger my anxiety. I had my brave face on and I was ready for the task until the moment I stood in front of the desk and the man asked, “May I help you?” I froze.

Thankfully, my staff realized my feelings and initiated a conversation. I explained afterwards, once I found my voice, that I had anxiety. He seemed pretty nice and led me to a chair to get my hair washed (once things were figured out with what I wanted to get done). I have the unlucky/lucky genetic trait of curly/wavy hair, which is rather interesting to manage.

I was trying to find words, but the moment my glasses came off when he was washing my hair, I started to panic again and then he started asking questions. Thankfully, staff again helped, and things again went smoothly. Really, all I need is that extra hand when walking into the scary unknown and for reassurance. The rest I can do until it become scary again. Then I reach out and then I relax again and then I panic and then I relax again and then I panic. That was pretty much the entire haircut.

But outwardly? I don’t think anyone knew how terrified I was. And honestly, I’m okay with this. They don’t have to know how terrified I am; they just have to offer their hand and be there.

They were also able to help me by having me focus on something else and talking to me to help me think of other things. Even helping me answer the questions that made me panic. It frustrates me that this makes me panic so much because I’ve overcome so many things. I keep wondering what is the cause.

Maybe it’s because I can’t control the situation. Maybe it’s because I don’t know anything about the social norms. Maybe it’s because I don’t understand looks. I don’t know. Whatever it is, I get extremely uneasy once I’m in the chair and I freeze the entire time. But my staff and friends who came with me were able to help me. And this was one of the few times in my life I had a successful haircut without crying afterwards. I even got an undercut.

Afterwards, I rewarded myself with a cherry chocolate Blizzard from Dairy Queen and, to be honest, I went shopping  as well and I lucked onto an awesome sale that I don’t regret. I’m still calming down from anxiety, but I am so thankful that I had people who understood me and were there with me.

I still don’t understand the concept of hair, and why hairstyles are so complex. I mean, I like being able to do things with my hair. But I just hate how people judge you for it. If I put my hair up in pigtails, all of a sudden I look so young that I get hit on by people way younger than me. Not only does that make things awkward for me—because I still don’t really understand when I’m being flirted with unless they’re being very very obvious—but usually I’m not interested, which makes things even more awkward.

Anyway, I got a lot of compliments when I posted my selfie on Facebook. I got a lot of smiley faces and congratulations, but to be honest, I was way more excited about the fact that I actually succeeded with not  crying after the haircut. I know I shouldn’t reward myself with food (my therapist and I have been working on that), but I’m not yet at that stage. And she said it’s okay to accept that I’m not at that stage yet, and to treat myself once in awhile after a really bad day. Or to reward myself after doing something really hard.

So I decided that instead of doing it after negative things, I’m only going to reward myself for doing really tough things. Because I kept falling into the bad pattern of treating myself after bad days again and again and again. And she was really proud of me for making that healthy choice. And you know what? I’m really proud of me, too. Plus, I have two new adorable Pusheen plushies that I can cuddle with and calm down with in the comfort of my own home and it’s all because I got a brand-new haircut.

Lucas’ Letters: Helping Turn Strangers Into Friends

Lucas’ story is a familiar one for many parents of autistic children. He was diagnosed with autism at age 3, and professionals told his parents that he would never speak. However, instead of giving up on Lucas, they sought out alternate ways to communicate with him, and he started talking when he was 7-years-old.

Lucas is now 10, and his favorite show is Splash’N Boots, a Canadian kids program. In December 2016, Splash’N Boots posted the story of Morgan, another boy with autism, on their Facebook page. Morgan was sad that he was never “invited to things,” so his mother had asked for people to send him Christmas cards. Lucas’ mom showed him the post and he told her that, since he never got “invited to things either,” he wanted to be Morgan’s friend. Thus, Lucas’ Letters, a pen pal club, was born.

Lucas has made many new friends and learned about many new places through Lucas’ Letters. With the help of Splash’N Boots, his pen pal program is expanding across Canada, and beyond.

Any child who wishes to participate can join, regardless of their ability. Based on their answers to a set of questions, they are “Pen Pal Matched” with a pen pal from a different town or city. When they sign up, they are mailed a package containing writing paper, pens and some helpful ideas just in case they need help figuring out what to write in their letters.

As Splash’N Boots explains: “The simple act of writing letters provides children with the opportunity to make new friends, build communication skills, develop empathy, and learn about the world in which they live.” The pen pal program is an invaluable gift for any child, but especially one who has difficulty forming friendships.

To sign your child up for Lucas’ Letters, click here.

 

 

‘A Boy Called Po’: An Honest Look at Autism

While, undoubtedly, there’s bound to be a select few moviegoers who storm out of the latest Marvel movie, enraged for one reason or another, it’s a pretty safe bet that the vast majority of viewers will leave the theater either entertained or not entertained. But when one creates art that imitates real life, they tread a finer line. Films about disability and illness must walk this tightrope like no other genre.

If you’ve been affected by disability or illness in your lifetime, and chances are you have, then watching a film that strikes a chord with your past or present situation can be difficult to watch. This reaction is paradoxical: If a film resonates with you, it can be emotionally challenging and painfully cathartic. At times, we instinctively look away because the image on the screen aligns too accurately with the images imprinted in our memories. Similarly, if the film does not resonate, or worse, fails to capture its subject’s authentic struggle, it is equally painful to watch. It feels offensive and insulting to one’s core. In other words, it can really piss you off.

I can certainly relate to both sides of this dichotomy. Growing up, my mother was an alcoholic. While she now has 18 years of sobriety, I still find certain films about alcoholism extremely challenging to watch. Whether a film completely misses the mark or hits too close to home, the inclination to turn away is tantamount. I cannot endure watching the personal hardships of my childhood made light of in Sandra Bullock’s “28 Days.” It’s infuriating.

But on the other side of this same coin, I always flinch and look away from certain scenes in “When a Man Loves a Woman.” It’s too close, too familiar. It stays with me afterward, longer than other movies or books. It digs up a shovel full of memories and emotions that I swear I buried years ago and dumps them on my doorstep. But it feels good. It connects me. Like pouring salt on an open wound, it stings, but also cleanses and promotes healing.

Watching films that portray our personal situations and histories can be difficult, but when they’re real and raw and honest and just get what we have been through, it’s worth it. They connect us, not only to ourselves and our journeys, but to everyone else in this world who has gone through it, too. They even connect us with those who have not traversed our unique paths. When we share a film with others that authentically captures the essence of our individual struggle, we begin to cultivate understanding, and somewhere deep beneath the surface of our collective consciousness tiny roots of acceptance begin to sprout and multiply. It’s quite powerful.

So when I was asked to screen “A Boy Called Po,” a film about autism directed, produced, and edited by John Asher, I knew the fine line I would be walking if I accepted. My son is autistic. While he was diagnosed a little over six months ago, I’ve been hiking uphill with autism on my shoulders for three-and-a-half years now. I knew if I watched the film I would cringe. I just didn’t know if it would be because it failed to do justice to my family’s personal journey, or if it would be because it hit too close to home.

Films I had previously seen about autism didn’t necessarily enrage me. But at the same time, “Rain Man,” “The Accountant” and, dare I say, even “Temple Grandin,” left me entertained but still wondering exactly where my personal reality was being portrayed on the silver screen. My life is filled with autism, but trust me, there is no card counting in Vegas and no secret accounting/crime-fighting syndication. Not even your classic farm innovation. It’s just my family, and autism. Is my family’s personal autistic reality not juicy enough for Hollywood? We are so misunderstood; so desperate for awareness and acceptance. Why is no one telling our story?

So I agreed to watch “A Boy Called Po,” and yes, at moments, it was difficult for me.

I winced each time the film’s autistic protagonist ,“Po,” played by Julian Feder, self-regulated or stimmed in a familiar way. I leaned forward, teeth-clenched and alert, anytime he was in danger or in pain. I chuckled aloud to myself and enjoyed a familiar eye-roll each time Po demanded “mac and cheese, please.” And each and every time Po asked his father, “Where’s Mommy,” I instinctively peered upward, attempting to deprive the rising tide of tears within my eyes the validation of an expectant cheek.

I hung my head in shame when Po’s Father, David, played by Christopher Gorham, lost his composure or verged on a breakdown. Every time he felt lost, or judged, or completely and utterly defeated, so did I. I was right there with him. Because I am there, every single day. So yeah, you could say that it hit home.

It hit home in every single aspect of my current reality as the mother of an autistic child. The constant questioning: Trust my gut or trust every professional? Socialize at the risk of bullying or shelter with the risk of solitude? Challenge by mainstreaming or support with peer acceptance?

Watching your financial stability sift like sand through your fingers, while also managing to simultaneously fail at parenting. Becoming accustomed to the absurdity of insurance policies and the infinite maze of red tape we are forced to blindly navigate. Facing mortality a little earlier than anyone should have to. Feeling alone in it. Being alone in it. It was all there in front of me, and while there were scenes from which I instinctively turned away, my gaze eagerly returned each time. As Emily Dickinson once wrote, “I like a look of agony, because I know it’s true.” I know this film speaks truth; it is drenched in my truth.

As the credits rolled, I let out a deep sigh and sat quietly for a while, a true anomaly for a neurotic like myself. What was I to do with all these feelings on my doorstep? Well, I could do what I always do. I could write about it. I could tell you about it.

Maybe you could tell your family and friends who don’t quite “get it,” like you wish they could. Maybe I could tell the other moms at my son’s preschool about the film. Maybe they’ll watch it and sit quietly afterward, pondering what to do with the feelings on their doorsteps. Maybe they’ll talk with their children who are in my son’s class. Maybe my family and friends will finally have more to go off of than “Rain Man” and “The Accountant” when trying to understand my son’s disability.

Maybe we can advocate for our children and one another by sending a message to mainstream media that we are no longer a minority, and that our lives are in no way lacking in the substance department. We are everywhere. We just don’t always raise our hands. They are very full, and carrying precious cargo. But the kind of acceptance we want, we can’t just ask for. We must spread it like wildfire. We can begin to communicate our daily challenges and nightly circling thoughts with one simple sentence. “You should really see ‘A Boy Called Po.’”

Sometimes we are so immersed in our own struggle, knee-deep in appointments and sleep deprivation, that we do not have the strength to advocate. We are not storytellers; we are exhausted parents. But director John Asher happens to be both. He has done our children a great service by making this film, and we can pay it forward quite easily.

Besides all of you, I plan on telling at least one fellow special needs mom, one family member, and one neurotypical friend or parent about “A Boy Called Po.” My hope is that you will do the same. If just one person looks upon my son with increased understanding because of it, well, then that’s the best payoff anyone’s had since Tom Cruise in “Rain Man,” and it’s about time.

———-

“A Boy Called Po” can be seen at select theaters near you beginning September 1, and for a limited time. For those of you that can’t make it to the movies, “A Boy Called Po” is available on iTunes.

 

For more on “A Boy Called Po,” visit:

Facebook: A Boy Called Po

Twitter: A Boy Called Po

*I’d like to thank Taylor Shannon of Prodigy Public Relations and John Asher, for dumping this shovelful of truth on my doorstep. Finally, I’d like to thank AutismAwareness.com for dumping it on yours!

She Has Non-Verbal Autism, But Her New Friend Understands Her Just Fine

If you have a non-verbal child, chances are you know how hard it is for them to make friends. That’s why we know you’ll love this video.

The mother of Carly Jade, a 6th grader with non-verbal autism, took the video at a local Chuck E. Cheese after she saw the way that Carly Jade interacted with her new friend, Zoe. Zoe is neurotypical, but seems to have figured Carly Jade out. As Shannon, Carly Jade’s mom, explained in her Facebook post:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she’s often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her..

So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed!

We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

We’ll let this wonderful video speak for itself:

Our daughter Carly Jade, is in sixth grade and is nonverbal, but like every little girl her age, she wants friends and to be accepted, but because of her special needs, she's often overlooked… Carly may not be able to speak her mind but she definitely shows her feelings with gestures and sounds, she also hears and understands what is said around her.. So when we learned of a classmate, named Zoe, who took Carly under her wings, we were more than overjoyed! We share this video to show everyone just how important it is to treat everyone equal… and how it captures what words cannot describe.

Posted by Shannon Sommers on Tuesday, May 23, 2017

12 Year Old Creates Disability App

Twelve-year-old Alexander Knoll is a shining example for changing the world at any age. The tween has invented the prototype for Ability App™, an application designed to “help people with disabilities and their caregivers search for specific disability friendly features, services and employment.”

Set up as a directory, the Ability App features locations such as restaurants, stores and hotels that state they are “disability friendly.” The app then lists exactly what disability-friendly features and services are available, such as Braille signs and menus, wheelchair ramps, automatic doors, service animal relief, and more. Services such as occupational therapy, grocery delivery and transportation are also included, as are employment opportunities specifically geared towards individuals with disabilities.

Most people assume that Alexander first thought up Ability App because a close friend or family member has some type of disability, but this isn’t the case. The idea came to him after he watched a man in a wheelchair struggle to open a door at a local sporting goods store. It made him wonder whether there was an app that would have helped the man determine ahead of time that this store didn’t have automatic doors, and also list other local sports stores that did. When Alexander went home and researched, he found out that such an app didn’t exist. So, he decided to create one.

He submitted his idea to Invent Idaho when he was just 10, and won its “Best of Show” award. After that, his app prototype received awards and recognition from I Cubed, the AT&T and Imagination Foundation’s Inventor’s Challenge, and the Discovery 3M Young Scientist’s Challenge. He’s presented his plans to teachers and university students and on various news shows, culminating in his appearance last week on The Ellen DeGeneres Show.

Watch this wonderful young man tell Ellen about his amazing app below.

Train Engine With ‘Autistic Traits’ to Join Thomas & Friends

For years now, Thomas the Tank Engine and his friends have been a hit with generations of children, both neurotypical and autistic. In late August, a new Thomas movie, “Journey Beyond Sodor,” will see the little blue engine venturing beyond his home and meeting new train engines. Theo, one of the new characters, will exhibit “traits on the autism spectrum.”

Although the company behind Thomas & Friends isn’t openly declaring that Theo—a geared engine—is autistic, people have pointed out his “autistic qualities.” As Christopher Kennan, the SVP of global content and executive producer at Mattel Creations (which owns HIT Entertainment, the company behind Thomas & Friends) explained:

“Theo very much wears his emotions on his sleeve and is not as comfortable with other people as he is with mechanics… He’s very particular. He likes to understand how things work. He likes to understand the world around him, and sometimes there’s difficulty communicating or being understood. So, we think he’s going to be highly relatable.”

This latest Thomas movie will be released in theaters in the U.K. and on DVD in 70 countries, including the U.S. There will be a diecast metal Theo toy, compatible with other Thomas engines, tracks and playsets, sold separately later in the year. A gift at the holidays, perhaps?

Woodstock Chimes Autism Story