What I Wish I Could Tell My Childhood Self With Autism

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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.

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

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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:

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

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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,

Kerry

#LIUB

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.

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What I Want More Than Awareness for My Autistic Sons

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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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110 Parents Describe Their Children With Autism in One Word or Phrase

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I am honored to know a lot of parents of children with autism. So I took over 100 of them recently and asked them to describe their children to me in one word or phrase. The results are very powerful:

  1. Fun
  2. Lovely
  3. Affectionate
  4. Courageous
  5. Strong
  6. Emotional
  7. Always smiling
  8. Helpful
  9. Marvelous
  10. Train lover
  11. Intelligent
  12. Awesome
  13. Horse lover
  14. Precious
  15. Great artist
  16. Sweet
  17. Energetic
  18. Gorgeous
  19. Mischievous
  20. Loves outdoors
  21. Beautiful
  22. Clever
  23. Loving
  24. Caring
  25. Cat lover
  26. Xbox addict
  27. Informative
  28. Routine lovers
  29. Toothbrush fascination
  30. Gentle
  31. Chatterbox
  32. Kind
  33. Light of my life
  34. Bus obsession
  35. Charming
  36. Giggly
  37. Anxious
  38. Quiet
  39. Dalmatian collector
  40. Harry Potter’s greatest fan
  41. Cheeky chub
  42. Dancer
  43. Mummy’s boy
  44. Fragile
  45. Joy
  46. Smart
  47. Special
  48. Animal lover
  49. Complex
  50. Cute
  51. Loud
  52. Thomas fan
  53. Little monkey
  54. Quirky
  55. Aspiring author
  56. Cheeky
  57. Amazing
  58. Best friends
  59. Funny
  60. Creative
  61. Bubbly
  62. My world
  63. Sunshine
  64. Handsome
  65. Simply the best
  66. Gifted performer
  67. Hard working
  68. Unique
  69. Jokestar
  70. Perfection
  71. One-armed woodworker
  72. Lively
  73. Determined
  74. Superhero lover
  75. History buff
  76. Incredible
  77. Talented
  78. Dinosaur loving
  79. Brave
  80. Wonderful
  81. Water baby
  82. Minion fan
  83. Teddy loving
  84. Figure obsession
  85. Blessing
  86. Brilliant sense of humor
  87. Inquisitive
  88. Excitable
  89. Calm
  90. My hero
  91. Loved to the stars and beyond
  92. Big-hearted
  93. YouTube lover
  94. Always on the go
  95. Texture seeker
  96. Endearing
  97. Adorable
  98. Bundle of energy
  99. Timid
  100. Extreme sense of fairness
  101. Carefree
  102. The reason I live
  103. Heart of gold
  104. Nothing gets in his way
  105. Talents outshine his difficulties
  106. Laid back
  107. Sensory
  108. Full of character
  109. Lego lover
  110. Little princess

What wonderful words! What fabulous families, proving everyday how perfect every child is regardless of any diagnosis. They have said it far better than I ever could!

See all of the responses in Miriam’s video, “More Than a Diagnosis.” 

Follow this journey on Faithmummy.

The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or illness. It can be lighthearted and funny or more serious — whatever inspires you. Be sure to include at least one intro paragraph for your list. 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.

Lead photo source: YouTube

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When I Tried to See the World the Way My Son With Autism Sees It

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You look may look at my son and see a child with autism. Or you may look at my son and think he doesn’t “look autistic” at all.

But when I look at him, all I see is his bright toothy smile, his infectious giggle and the long locks of brown hair he seems to hide behind when he talks to people. I see my son!

(Who has autism.)

One of the wonders of humanity is that two people can look at something and see very different things. It’s all a matter of perspective.

You could see a hurdle where I see a challenge.

You may see sadness where I can feel joy.

You may see difficulties where I see strength over adversity.

You may see weakness where I see bravery.

You may see a puzzle where I see wonder.

You may see a label where I see my son.

If all you see is the label when you look at him, then you are missing out on so much!

But this is the complex world my son has to navigate his way around. And as his mother, I had to learn how to support him to make sense of it all.

How could I do that when we live in a world in which people’s opinions differ so vastly, and their past experiences shape how they interact with him? How could I understand how he feels and help him make sense of this world, and help others see who he really is?

Simple… I had to change the way I viewed my son’s world. The ups and downs, the highs and lows, and the challenges he faces daily. Not to mention the inner strength and talents he has within. I had to change my perspective and try to step into his shoes to see the world as he sees it.

You see, people may think he just chooses not to leave the house and is a “recluse.” But imagine a world in which complex interactions and going beyond the safety of home floods you with all-consuming anxiety that can make you feel physically sick. Now can you understand why stepping outside is so daunting for him sometimes?

People may think he doesn’t understand what they are saying, so they talk over him or ignore him completely. However, try to imagine how it feels to struggle following the ebb and flow of conversations. Not knowing how and when you are meant to respond, or what people’s facial expressions actually mean. I feel it’s no wonder he avoids conversations with people who don’t know him very well.

People may think he has no sense of humor or can’t take a joke. But instead, try to imagine living in a world where people say things they don’t really mean and make jokes about things that just don’t make sense. It’s not that he doesn’t have a sense of humor, he is really funny and makes people laugh every day. In fact I say he has a giggle that is infectious.

People may think he wants to control things. For a second, just picture how it feels to not be able to predict what is going to happen next, and how out of control this would make you feel. And maybe then you will realize why he feels the need for control or routine.

He may have difficulty seeing the bigger picture of what’s happening around him and seem like he is in his own world, and people might think he is ignoring them. Just remember that his world is rich and full of intense experiences. He sees and feels things so vividly that sometimes it can be hard for him to switch his focus to anything else.

Sometimes people think he is rude or that he doesn’t care about other people’s feelings. Try and keep in your mind that people’s rules can seem unwritten, confusing and mysterious. Imagine not being able to understand how other people feel, what they could be thinking or even that they are giving clues about their emotions through their body language. It’s not that he doesn’t care, he just doesn’t experience emotions like you do. 

Just imagine…

woman putting her face on shoulder of young son
Michelle and her son.

How would you feel if you had a really creative mind full of amazing ideas but no one recognized your potential just because you didn’t have the words?

How would you feel if you had so much love to give, but people didn’t know because they didn’t enter your world to feel it for themselves?

How would you feel if you could see the beauty in the things other people might ignore and people dismissed the things you were passionate about?

How would you feel if people wanted to change you, and said that the things you like to do weren’t socially acceptable?

How would you feel living in a world that doesn’t recognize the potential that lies within you because of a label?

Imagine…

Just for a minute, put yourself in his shoes! How frustrating must it all be at times for him?

If people don’t learn to see things from a different perspective, my son’s perspective, then they may never see the wonderful talents that lie within him. They may never see beyond the challenges and labels he faces, to view what he has to offer the world.

And this is why I do what I do. This is why I fight so hard to raise awareness, understanding and acceptance. No matter what day or month it is. Because autism is part of who he is, but not all he is.

I want to open the window of perspective and blow away the cobwebs of ignorance, so my son can hopefully live in a world that is far less confusing, much more aware, and has a greater level of acceptance than ever before.

It’s all just a matter of perspective.

Follow this journey on A Slice of Autism.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. 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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