Home > In Their Own Words > In Their Own Words – What is Autism?

In Their Own Words – What is Autism?

This “In Their Own Words,” is written by Megan Winkler-Schmitt, who was inspired to write after her best friend’s son was diagnosed with autism.

I was thinking today, as I dried my hair, about what this mysterious thing called autism really is. I started making of list of what it is, based on what I’ve seen only, and I ran into the other room to write it down. I’d like to share it with you.

Please note that this is what autism looks like to me. These are the experiences I’ve had with it, and it differs from your own. I do not have a child with autism, but a little one very special to me and very dear to my heart struggles with it. I have learned so much from this little angel who is undeniably special and infinitely precious, and I see autism as something very real now. Let’s just say that for me, myths have been thrown out the window, and when you know someone with autism, you realize that what you thought you knew isn’t correct at all.

I don’t know why this jumped into my head. I wasn’t reading anything on it online. I wasn’t talking about it. I didn’t see a news program on it. But, sometimes, inspiration hits and you just have to listen. So, here are my thoughts. Please, please, share your thoughts with me, too.

 (And yes, I realize that it came out in very loose poetic form; it’s just how it works sometimes.)

 Autism is joy in little things.
It is pain and heartache.
It is the pleasure of bubbles;
the consistency of golden toast.
It is running through sprinklers,
because it just feels so good.
It is frustrated little grunts,
communication in screams,
a mommy who just wants to hear,
“I love you,” but even “Mommy” would be nice.

Banging your head against the wall,
it is the sleep of a sleepless night.
It is pleading and begging,
bargaining and weeping.
It is a mother and father clinging to one another,
and faith.

It is the crunch of a leaf,
it is the wind in your hair.
It is the simple joy of repetition,
the comfort of a pattern,
the security of routine.

It is unexpected moments,
of open-mouthed kisses:
those little things others take for granted.

It is loving a fluffy dog with your cheek,
and crossing your eyes,
just because the world looks curiously different that way.
It is inventing your own language
that only the fairies and Mommy speak.

It is struggle; it is strife.
It is imperfection,
but, then again,
so is everything,
in life.

It is tears and fears,
but it is simplicity and innocence.
It is not taking for granted,
it is cherishing, hoping,
running up a down escalator.

And if life is perfect,
just the way it is:
faults and imperfections,
second-guesses and small joys,
then what is autism but life,
lived in its own way?

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

  1. tara
    September 25, 2010 at 4:02 pm

    beautiful

  2. Beth
    September 25, 2010 at 4:16 pm

    For so long now I’ve been desperately trying to figure out what exactly is Autism. I find that the more I read, the more I need to read to truly answer that question. It is an endless circle.

    You’re writing sums it up beautifully and it made me realise that the answer is so simple. It’s not theorists, science or endless accounts, it is exactly what you have just described, its real. Thank you for sharing it.

  3. gayle perreault
    September 25, 2010 at 4:18 pm

    Lovely! I do have a child with autism and my experience is similar to your thoughts. thanks.

    • Mary
      September 26, 2010 at 7:00 pm

      I definetely agree. Only God knows how many tears I’ve cried.

  4. Julie
    September 25, 2010 at 5:59 pm

    My best friends son is autistic. He is the most precious little boy I have ever met! My life would not be the same with out him in it and I am so honored to know him! My son has aspergers but i dont struggle with the things she has to struggle with! It takes a special mom to raise an autistic kid and i am soooooooo proud of her! This is beautiful!! I love it! I am going to put it in my blog on myspace!

  5. September 25, 2010 at 6:08 pm

    Such a gift, to have a friend who can keep her eyes open and lovingly see both the wonder and the pain.

    Perhaps autism is wondering why people are so hung up on words when there are so many more interesting sounds to be made. It is loving water in all it’s forms… from a warm bath to a spit-out mouthful making it’s mark on the sidewalk.

  6. Renee Gardner
    September 25, 2010 at 6:48 pm

    I just wanted to commed you for writing such a beautiful poem! I am the mother of a 14 yr old Autistic boy named Ryan…and when I read your poem I started crying by the second line! Your words touched my heart because they were my own thoughts exactly! Thank you so much for sharing and I am so glad that you care so much!!

  7. gemma
    September 25, 2010 at 8:36 pm

    Wonderful! Very touching and close to my heart.

  8. james
    September 25, 2010 at 9:23 pm

    I have a niece that has autism and wished i lived closer to her so i could be more a part of her life!!!!!!

  9. September 25, 2010 at 11:15 pm

    We have a four year old with autism we are trying to potty train and a soon to be 3 year old with ADHD who isn’t trained yet. They both disrobe and play in their diapers. We actually invented some clothing that helps the situation. http://www.ikidsfashion.com thanks a lot!

  10. Sandy
    September 25, 2010 at 11:52 pm

    Your friend is very blessed to have you in her life. I am sure she has told you, but Thank You for taking an interest and understanding. It is individuals like you that will help those of us going through the ups and downs get through it all. You said it beautifully!

  11. September 26, 2010 at 1:11 am

    Beautiful! Thank You for Sharing!! This family is fortunate to have YOU in their lives!!!

  12. Moria
    September 26, 2010 at 2:45 am

    What is autism? It is pain, anger, disappointment, and frustration. It is also happiness, pure joy, amazement, and amusement. It’s crying, it’s laughing, it’s wanting to scream, it’s being speechless, and having so much to say. It’s walking on eggshells, and floating on cloud nine. It’s a gift and a curse. It’s not fair, and it’s awesome. It’s a chance to learn and relearn. It’s wishing you could hide, and it’s wishing everyone could see. And sometimes, it’s all this at once, sometimes more. But it is never “nothing” and it’s nothing I would ever change.

    Autism is emotional, its physical. It’s obvious, and sometimes its obscure. The pain is not only mine, it’s his as well. So is the frustration. And the disappointment. The sounds hurt, the socks are tight, or maybe it’s the shoes today. The headphones help, but they sit too tight. It’s wanting a winter jacket when its 90 degrees out. Because it has a hood. And a zipper. And those are cool! It is someone touching him and he doesn’t like it, doesn’t understand why he is being touched. It is him hitting or kicking, or maybe today he will just yell at that person. Hey, quit following him! He’s happy to see you, or has a question, and is slapping at you. Its not meant to hurt, but sometimes it does. Sometimes it’s annoying. And sometimes it’s exasperating. Jeremiah, use your words. Say, “Excuse me.” And sometimes he remembers. Give your arms a rub, hold your belly, and sit down on your bottom. Give him a giant hug and tell him, “Thank you for remembering to use your words!” A simple “Thank you” will never be enough.

    He can tell when you are really happy, or mad, or sad. Just don’t feel anything in between or you will end up explaining things you have no words for. Autism is listening to these fantastic stories he tells and wondering how much of which ones he actually believes. And just where did they come from anyway?? And how did this word bring us to that word? Where is this conversation going? Did you know this isn’t even a conversation… you haven’t said one word yet! Look at his face now, suddenly he’s mad. Why? You should know! But you don’t, and he doesn’t either. Or maybe this time he does, but he can’t tell you. Well, no time to think about it, he‘s already on a new subject. Or maybe he’s storming up to his room to be alone. And then there’s that smile… you know the one. It could light up the darkest corner, erase the deepest pains. An expression of the pure love he feels for you. That one smile tells you it will eventually all work out. How did you manage life before that smile? Smile back. A real connection.

    It’s chain locking and dead-bolting the front door, the back door, and his bedroom door. It’s keeping him safe, because he sees no danger in leaving the house in the middle of the night. Bike rides are awesome in the dark. The school has cookies. And if the cops come, they have guns and flashlights! But don’t worry mom, no one can hurt me, because I am tougher than a polar bear! It’s not leaving windows open because he might go after the screen he just (accidentally) pushed out, or maybe he’s getting a toy he just dropped (threw) out the window. Its holding his hand when you don’t have any free hands because he might see something he wants and go after it, regardless of whether it’s safe or not. It’s watching him hop like a frog around the apartment complex, or flap like a bird because he’s excited to be going somewhere or seeing something. It’s watching him smack himself on his head, belly, or privates, because it feels good. It’s being amazed he can ride a bike when he cant even walk quite right.

    It’s washing him in the shower because he just cant figure it out. It’s losing an entire bottle of body wash and shampoo….and conditioner when you let him try it himself. It’s buying funny little spongies to encourage him to WANT to learn to take care of himself. It’s buying coconut scented soap because a song in preschool says that’s what you should use. It’s listening to him scream and cry because he’s afraid the water will get in his eyes. And then you take him to the pool and watch in awe as he teaches himself how to swim. You wonder why can pool water cover his head but a bucket of water in the bathtub freaks him out. And how does he manage to play in sprinklers without getting his face wet? It’s going outside in the rain, so he can feel it and smell it, and maybe even taste it. He says the sky is leaking.

    It’s watching the same cartoons over and over, or listening to the same song 10 times in a row, because it makes him deliriously happy. It’s walking the same route every time you leave, so he feels comfortable you won’t get lost. It’s letting him be leader and door opener. Giving him responsibilities makes him feel special and important, which he is. But it’s also limiting that control so the other kids can feel special and important too, because they are. It’s learning to balance his needs and preferences with every one else’s. It’s hard. But it is possible. We do it every day.
    It’s learning that not every child who is “misbehaving” is a spoiled brat who needs some discipline. It’s learning that the poor little boy in the middle of the store might be screaming because he is overwhelmed with visual and auditory stimulation and doesn’t know how to cope with it. It’s about learning what that even means. It is realizing that some really are just spoiled brats. It’s realizing that parents need just as much help as the child does. No parent is one hundred percent right one hundred percent of the time. It is learning to ask for help when you don’t know how to handle a situation. It is about reaching out and FINDING someone who really does know what you are going through. It’s asking questions and not getting answers, and asking more questions, and getting ran around in circles. It’s about finding the right people to ask the right questions to, to get the right answers. It’s about deciding when and how to talk to the kids about autism and asperger’s syndrome. We have started.

    He is starting to realize he’s different. I have known for an eternity. I know that he will never quite be “normal”, and every day will be a struggle to fit in. And that hurts. Two years in therapy has brought him so far, but he still has so far to go. He is frustrated when he doesn’t understand. All the tears, the attitude, the confusion. So much for such a little guy. Why is so-and-so doing this? Why is so-and-so doing that? Why don’t they like me? Why are they being mean? Baby, they aren’t trying to hurt you or be mean, they are trying to play. No tears now, ok. Look at me sweetie. He looks now. Why don’t you go ask them if they want to play your way? Don’t be scared, they want to play. No, you don’t hate them, they just don’t understand things the same way you do. Go show them what you mean. It will be ok. And then it is ok. For a while at least. I see the smiles, hear the laughter, and soak it up. Today was a success. I will worry about tomorrow in the morning.

    All of this I would never wish on any child or parent, and at the same time, I wouldn’t change a thing.

    • Barbara
      September 28, 2010 at 9:54 am

      OMG Moria that was awesome. You explained it to a T. It is the ups and downs…the good times and the sad. Thanks for that explanataion!!!

    • Lori
      October 4, 2010 at 6:07 pm

      Moria that was VERY well said. I have felt several of these things with my own son and I had to stop a couple of times to catch myself because I wanted to cry! Thank you so much for sharing!

  13. An Margaret Abanes
    September 26, 2010 at 8:10 am

    beautiful, beautiful, beautiful. You said it all. I am a mom of a child with autism. Thank you for sharing. we need more people like you. Your best friend is so blessed to have you. Her child is blessed even more to have an aunt like you. Thank you!

  14. September 26, 2010 at 11:10 am

    Sunday, September 26,

    I loved the poem and referred my readers to it in my own blog, http://www.wytsocialskills.com. I thought it spoke beautifully to the idea of embracing one’s beauty along with one’s imperfections.

    As I also mentioned earlier in my blog, as parents and professionals, the single requirement to fostering success in an autistic person’s life is to embrace their whole being, allowing them freedom to build from their unique set of strengths rather than transforming their traits in an effort to conform to a non-autistic world.

    As someone working with Autism every day I see the biggest pitfall in improved detection and intervention efforts is that the diagnosis of “Autism Spectrum Disorders” is becoming the most feared and dreaded label for any parent. The label completely strips the child of his set of gifts by placing him in the “them” category.

    I loved Moria’s comments as well. I think the more you can get your child to see everyone else’s differences and shortcomings the less he will feel inadequate and alone. Use examples that he can picture in his mind to make an abstract concept more concrete (like your polar bear example above). Focus on the fact that the “mean” kids are learning how to be a friend just like he is working on dealing with things not going his way. This will get him to focus on the similarities he has with others rather than just dwelling on the differences. All my best. Judy

  15. Mary
    September 26, 2010 at 7:06 pm

    I was almost at my breaking point when I looked up this sight. It has been a very challenging day with my son with autism. I have cried, begged, pleaded, and prayed. If it wasnt for God I would have broke down a long time ago, but because He promised to heal my son from this terrible condition I know I have to hold on. If only he could talk to me or communicate to me what he is feeling. I love him so much.

  16. cindy montana
    September 26, 2010 at 9:04 pm

    beautiful, thanks for sharing!

  17. Regina Villanueva
    September 26, 2010 at 10:06 pm

    Thank you for sharing. I feel the way you do about my child. I wish you and your son joy and peace.

  18. David Hunter
    September 27, 2010 at 1:24 am

    Beautiful poem, as everyone is saying, but there is also a very dark side to autism as well–a side that has a death aspect to its isolationism. My son is 30, and I call autism the little red devil that sits in the room with us and takes us down a death spiral to a numbing state. It is a form of Death. You can see it in the eyes of the parent–the “autistic eyes” that we parents are said to have, even though we don’t have autism. Autism can kill the souls of those around it, for sure.

  19. spaceandtime
    September 27, 2010 at 8:17 am

    Wow Moria, wonderful comment to the initial article, enjoyed your comment and the poem. I have a son ( 2 year 4 month) who is in the spectrum, just started the therapy and I am hoping that he will be verbal someday. The poem was touching, I could relate so much to it.

  20. Erin Kuhlman
    September 27, 2010 at 6:52 pm

    This is my precious little girl to a tee, and despite the trials, I wouldn’t trade her for the world! Every parent of a child with autism should have a friend like you.

  21. Christina
    September 29, 2010 at 10:28 pm

    All I can say is WOW!!! This pretty much sums it up. I have a 3 yr old lil boy with Autism and he doesnt talk. I totally could relate to everything that you said. Its the small things that we have to appreciate and love with them in life. Thank you so much for sharing, that touched my heart so much!!!

  22. Michelle Holland
    October 1, 2010 at 2:13 pm

    I think you pretty much hit the nail on the head…now please excuse me, I need a tissue to dry my eyes. that was beautiful, thanks =)

  23. Lucy
    October 2, 2010 at 4:46 pm

    Beautiful!

  24. Lori
    October 4, 2010 at 6:04 pm

    You brought me to tears! What a wonderful poem. I would love to share it with family/friends. Thank you so much for sharing.

  25. Jen
    October 15, 2010 at 2:03 pm

    I cried because that poem…it is my life with my son living with Autism going on 15 years now. Never has an “outsider” seen so clearly before the walk we walk. Amazing!

  1. September 5, 2011 at 11:43 am

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