My Experience as a Young Person With Autism at the United Nations' World Autism Awareness Day

My name is Tom. I am 16 years old and I have autism. I went to the United Nations’ World Autism Awareness Day 2016 because I wanted to learn more about global issues affecting autism. Being a part of World Autism Day at the United Nations was an excellent experience that changed my perspective about what needs to change in global attitudes toward autism.

The World Autism Day conference of 2016 focused on inclusion and neurodiversity and included speakers from all over the world. The keynote presentation was given by Steve Silberman, the author of “Neuro Tribes.” One of the things that Mr. Silberman said in his keynote was that inclusion “does not mean just inviting people with autism to visit.” Mr. Silberman stated that inclusion is about ensuring we have an equal chance. I felt that this was one of the most important statements made at the conference, because it brought up the point that people with autism need to be included in a meaningful way.

I was sad to hear that many people living with autism outside of the United States are subjected to mistreatment because of negative stereotypes. More than one speaker at the conference spoke about how people with autism are treated inhumanely. It hurt my heart to hear their stories. I wondered how we can change negative attitudes toward autism.

When Thomas Gass, the U.N.’s Assistant Secretary-General for Policy Coordination and Inter-Agency Affairs, said during his presentation that “this is a shared vision of humanity,” it came to me. I came to believe that people with autism and their families need to be out in the open about autism. I feel living in the shadows with autism does not help us, because people cannot learn from us. I believe people are afraid of what they don’t understand. If we live in the open with our autism, we might be better understood. That has the power to change negative stereotypes.

My experience as a person with autism at World Autism Awareness Day was a positive one. I believe more people with autism should have an opportunity to be a part of this event.

Tom at World Autism Awareness Day 2016
Tom at World Autism Awareness Day 2016.

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The Role Only I Can Play for My Adult Son With Autism

daniel and mom at a picnic in the park Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day.

By social media standards, life with my son may not win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations. Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation the value of these visits exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care. I’d be free from those demands, free to explore a more satisfying connection with him as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.

We met at a local park and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His “obsessions” have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own; they seem to be triggered, in fact, by my presence. Old patterns are difficult to break. Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be only mine. The very competency of the staff rakes the embers of my doubt, which has smoldered for years, the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the meltdowns and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees, as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our visits, the routine we’ve established, the mild experiences of my Facebook posts.

The procedural support is in place to help him towards a positive, independent direction. But he needs the emotional nourishment of his mother, too, of all of us who have loved him without question for a lifetime, whose love transcends all circumstance. I can’t rest until I find that place again.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son or our relationship to one another. No line will be drawn beneath Daniel’s life or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes.  But it’s what I have.

The Mighty is asking its readers the following: What’s one part of your or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

What I Wish I Could Tell My Childhood Self With Autism

Several years ago, I received an e-mail from a woman who was a reader of my blog and wanted to know what sort of advice I could give to her 9-year-old daughter who had just been diagnosed with autism. She suggested that I write a blog post in the form of a letter to my younger self, which could also help other young teens and adolescents on the spectrum, as well as their parents. This letter, which was originally published on my blog, has since been featured at numerous autism events and published in several outlets, including the blog of Autism Speaks.

Dear Amy,

I know you’re feeling pretty bad right now. The other kids make fun of you a lot, and you don’t know why. You’re trying really hard to be friends with them — doing all of the things you think they want you to do — and it’s just not working. But there is one thing you should know: It’s not your fault. Other people might say that, and you won’t be able to listen to them; but I am hoping that you will if it’s coming from me. It’s not your fault. Say it over and over in your head when you feel the worst, because that’s when you’ll need it most.

It’s not your fault.
 “How can it not be your fault?” you’ll say to yourself as the next few years go by. Everyone else can do this, can make friends, and be “normal.” Why can’t you? That’s just one of the many questions I know you have, questions you don’t know how or are afraid to ask. They make you feel overwhelmed, like sitting in Mrs. St. Pierre’s classroom every day, fidgeting nervously in your seat. You always get up during class to sharpen your pencil, and I know it’s because you enjoy the smell when they’re freshly-sharpened — it calms you down. So don’t feel bad if the other kids snicker or laugh when you smell your pencil. They just don’t understand.

You care a lot about what the other kids think of you. I know you hate going to the pool every week because you have to change in the locker room, and the girls make fun of your feet. This will cause you not to feel comfortable wearing flip-flops for many years, and you won’t be OK with wearing them again until you’re much older. It’ll be like that with a lot of things people say to you in school — their exact words will fade from memory, but the effects they have on you will last a long time. But don’t worry — one day you’re going to make friends with someone who really loves your feet, and will call your little toe, the one that didn’t grow in right, your “Lucky Toe.”

Amy in the sixth grade
Amy in 6th grade.

That’s something you feel like you could use a lot of right now — luck. You keep hoping things will get better, but they never do. I have some good news, though; you won’t lose that hope. No matter what happens, you’ll still be optimistic — foolishly, maybe, but when you’re older, people will tell you how wonderful it is that you are that way.

But I have to be honest with you: things are going to get a lot worse before they get better. You’ll be in junior high school soon, and you don’t know it, but seventh and eighth grades will be two of the worst years of your life. Once again: it’s not your fault.

You like to look at things outside the window — the trees and blue sky make you feel calm. One day you will be in study hall, and you’ll go right up to the window and stick your head out of it. That’s when someone will tell you to jump. Other voices will join in, and even after the teacher finally tells everyone to be quiet and calms things down, you’ll hear them in your head for a long time to come. Every day, someone will make you feel less. Not human. Unwanted. And you’ll keep your head down and take it, because no one’s going to tell you anything different.

But I will.

You’re not less, Amy. You’re more. More because you have to work twice as hard as everyone else to make your voice heard. You don’t know how to fight right now, except for when you lash out after not being able to handle the pain anymore, and then it’s you who gets into trouble, rather than your tormentors. They know how not to be seen, to avoid detection. You don’t. Even as an adult, you won’t quite fully master the art of subtlety, but right now, you’re bared to the world. Completely vulnerable. And your classmates are taking full advantage of that fact. They know how to hurt you in the worst ways, so they can get their kicks from your reactions. You can’t understand what they’re doing, and you just play straight into their hands, every time. Once more: It’s not your fault.

These days, your classmates call you names — “ugly,” “freak,” “psycho,” “loser.” “Retard.” They call you these things because they don’t know you, they don’t care to and they don’t want to. You’re trying so hard to force yourself into their world, with little to no success. But you will have friends one day, Amy. Better still, you won’t have to fight for their friendship — they will come to you. I know how unbelievable that seems, especially since you feel like no one wants to be around you at all, not even your parents. But you are loved, even if you don’t realize it. You just have to learn how to love yourself.

There are some things that you are good at, Amy. Like writing. You just started writing some poems, and were happy when you saw them published in the local paper (your mom and dad sent them in for you, just in case you were wondering how that happened). I have three words of advice for you: Keep doing it. Right now, you write because it’s an escape from the world around you, and you don’t care about being “good” at it. But one day you won’t just be writing for yourself — you’ll be writing to help other people. And your writing will help people, even when you don’t realize it. So you’ve got to keep at it.

It’s hard to think that you’re good at anything when people are constantly telling you that everything you do and are is wrong. In middle and high school, your fellow classmates will tell you to your face to kill yourself, and that no one wants you around, or would care if you were gone. Don’t listen to them. I know it’s difficult, and their words will go right into you, but they aren’t worth it. You are a good person, a person worth having around, and you’d make so many people sad if you were gone.

The world is going to need you when you grow up, Amy, so you have to get there. You have to make it through these dark days, because you’re going to make a difference in the future. Someday, people will want to hear what you have to say, and you won’t believe it at first. But it will be meaningful and wonderful. You’re going to have to take a lot of crap and go through a lot of pain to get there, but I promise you, it will be worth it.

My time with you is now growing short, young Amy. I hope that some of the things I’ve said have brought you comfort, or at least given you assurance that there is, indeed, light at the end of this tunnel. In short: things will get better. A lot of people will say that to you, and you’ll think that they’re just trying to make you feel better, but it’s really, honestly, true. You’re an incredibly special, talented girl, and right now you’re toiling in obscurity (as so many great artists do), but someday the world is going to see how amazing you are, and all you’ll think is, “Where were you people when I was younger?”

The future seems far away, almost impossible to think about, but don’t be afraid to think about it. You’re not even sure if you’re going to have a future, but you will. You will. And I will say to you now three words that you don’t hear very often (even when your mother says them to you). Three words that you’ll be desperate to hear when you get older, especially from a good-looking member of the opposite sex, but that seem very off in the distance right now: I love you. I love you, my younger, high-strung, uniquely wonderful self. And I’ll be here waiting for you. See you in 15 years!

Love and many, many hugs,

Your 26-year-old self

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

A version of this post originally appeared on Amy’s Tiny Corner of Existence.

The Mighty is asking the following: Write a letter to your teenaged self when you were struggling to accept your differences. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Watch How Apple’s Technology Helped an Autistic Teen Find His Voice

Dillan Barmache, a 16-year-old with autism, always had a lot he wanted to say. Now, with some assistance from his iPad, he’s sharing those thoughts with the world.

In a short film released on World Autism Awareness Day called “Dillan’s Voice,” which was created by Apple to celebrate Autism Awareness Month, Barmache tells the story of how he always wanted to connect with others, but had difficulty communicating what he wanted to say. That all changed when he began using his iPad to type out his thoughts, which are then read out loud with an augmentative and alternative communication app.

“Having a voice has changed everything in my life,” Barmache says in the video. “No more isolation. I can finally speak with the people that love me. I can say what I think and let them know I love them, too.”

Barmache’s use of this technology first made headlines in 2014, when he  delivered a middle school graduation speech at the age of 14.

Apple also released a follow-up video called “Dillan’s Path” starring Barmache, his mom Tami and his therapist/communication partner Deborah Spengler, who explain the importance of remembering that someone who isn’t making eye contact or using their voice is still an individual who deserves to be understood.

“Not being able to speak isn’t the same as not having something to say,” Tami says in the video.

As Barmache said in an interview with Mashable about the film, “The iPad allows me to be seen.”

Watch “Dillan’s Voice” below:

And the behind-the-scenes follow up “Dillan’s Path:

To Everyone Who Lights It Up Blue on World Autism Awareness Day

To everyone who will “Light It Up Blue,”

Wherever you are on April 2, you can make a huge difference for our community.

How? By turning the world blue!

Wear blue! Light your homes blue!

Light your buildings where you work blue!

Be all the blue you can be!

For me, going blue for autism is a cause close to my heart. When I was 4 I was diagnosed with autism. Growing up I wish there was an initiative like Light It Up Blue to start a conversation with me.

To backtrack a bit for those reading this who don’t know, in 2007 the United Nations proclaimed April 2 as World Autism Awareness Day.

Two years later, the Light It Up Blue campaign was born, and even more awareness became possible in our communities. Now every year I wear my blue T-shirt on April 2, take a selfie pledging to go blue, and finally go to Home Depot or my local hardware store to purchase a blue light bulb so my house can go blue.

To me, going blue is essential this year. Today autism is the fastest-growing developmental disability out there. The number of individuals being diagnosed with autism when I was a kid in the 1990s was approximately one in every 1,000 children; now, those numbers have increased to one in 68 children. Every day our lives are touched by autism, whether it is in your immediate family, a friend or maybe an acquaintance who you converse with over coffee every morning at work.

That’s why I’m thankful for people like you who go blue and, most of the time, stay blue throughout the entire month of April, which is Autism Awareness Month. I hope when you read this letter you know that you are making a difference by being involved with this important cause.

Blue is so much more than just a color now to us. Blue is a movement to help make people aware and more understanding of those with autism. For that I will be forever grateful for all of you who decide to get involved. With your continued support, we will make autism heard around the world, not only in April but all year round.

So in closing, I hope you will make the below your mantra and encourage others to do the same. Keep telling yourself that…

man holding light it up blue sign
Kerry celebrating World Autism Awareness Day.

“I will wear blue on April 2.”

“I will light it up blue on April 2.”

“I will help shine a light on the millions of individuals worldwide who have autism.”

“I will show people that autism is different and not less.”

“I will make a difference.”

Your friend,



A version of this post originally appeared on Kerry Magro.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

What I Want More Than Awareness for My Autistic Sons

Do you know that World Autism Awareness Day is on April 2? On that day, you’ll be asked to “Light It Up Blue” or “Color the World” to help raise awareness for autism.

How important is World Autism Awareness Day to me?

Meghan Hanley’s sons.
Meghan’s sons.

I booked my boys’ birthday party on that day. I looked at my calendar and there wasn’t a rainbow of appointments staring back at me on that day so it meant it was open. Then my girlfriend texted, “Oh, you’re so awesome having their party on that day. I bet you’re going to do something big.”

I sat there for a second and had to really think about what is so special about that day. I actually had to ask! See, the thing is I didn’t book my boys’ birthday party on April 2 because I knew it was World Autism Awareness Day.

We raise awareness every day no matter where we go — sometimes loudly! I talk about autism, write about autism, research autism. Hell, my van is covered in stickers to raise awareness and keep my boys safe for first responders just in case.

What I’m really looking for is acceptance and understanding. I want people to understand my boys.

When my son, Beast, was at the hospital, a doctor called autism a behavior disorder. And she said it as she was walking out the door. I was so shocked that I didn’t have a chance to correct her or ask her why she said that.

Then I thought about it — people can be aware of autism, but they may not understand autism. I feel like every medical professional who I’ve been talking to about Beast looks at the nonverbal piece and doesn’t listen to everything I have to say about my son. Because they don’t listen to a verbal account of what’s going on with him and don’t understand all of the nonverbal language, he’s being dismissed.

It’s the flip side of that coin for my other son, Bubba. That kid can talk! He will talk your ears off. That’s how he processes, controls or regulates a situation. I’ve heard it a million times that he’s smart and quirky. Not a big deal. Social communication is where he faces challenges. He’ll agree to anything and say anything if he thinks he’s in trouble. He has a hard time with executive functioning. He needs clear step-by step-instructions. He was getting punished and made an example of in school, and his self-esteem suffered because the school didn’t understand him.

I want people to understand and accept my autistic boys. 

My boys are snowflakes that are beautiful and complex.

Autism is an explanation and not an excuse.

I want people to look closer, see, listen and observe.

I need people to learn that my kids do certain things that may seem different, but it’s how they communicate, relate to you, express an interest, get your attention or get your love.

April 2 might be World Autism Awareness Day, but every day is autism acceptance day.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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