Yes, I’m Nonverbal. But That Doesn’t Mean I’m Unintelligent.

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Screen Shot 2015-01-30 at 9.26.24 AM All people communicate, but not everyone talks.

Some people talk a little but not conversationally. Some people say words and phrases out loud that don’t match what they really want to say.

Sometimes I use talking words, but I’m still very much nonverbal. Saying words out loud is not always possible or accurate for me. My pronunciation of words isn’t totally clear, and I say words in a different order than most people would. I can more fully express myself using a letter board or Proloquo2Go.

Many times I say nonsensical things like, “Larry boy!” or “Go back to green house!” and I repeat it many times for no reason. I hear myself and think, Boy, I sound ridiculous; and I wish I could stop, but I have no control.

When people ask me things, I know exactly what I want to say, but there is an ever-present blockade between my brain and my mouth. It is extremely frustrating, as you can imagine.

Especially damning are the assumptions that my intelligence is low because of my thwarted attempts to respond the way others expect — with verbal words. I can remember a time when a person said to Mom that I have a very low IQ of 40, and I wanted to scream, “No!” But I couldn’t. It was horrible not to be able to defend myself.

I sincerely, altruistically, hope and pray that more autism pros like teachers and doctors will realize that autism causes major issues with getting the body to cooperate with the brain to respond. But ability to comprehend is unaffected. This will make way for more appropriate help for people with autism.

This post originally appeared on Red Roses for Autism.

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Dear Disneyland Staff Member Who Saw Past My Meltdown

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My mom and I walked into guest services; I was visibly upset after a misunderstanding with a cast member. I sat there crying, in meltdown mode, as my mom began to explain the situation. You and your staff understood. You welcomed us to stay there as long as I needed to, which was a kind gesture.

But what happened next was the most magical of all.

After asking my mom, you came over to me, and I agreed to listen to your idea. You began to tell me how busy princess Rapunzel was. (She’s one of my favorites and was one of the two princesses I hadn’t met yet.) It was near the end of the evening’s Halloween party. I was overstimulated but determined to persevere and enjoy it after all we’d been through to get tickets to the sold-out event.

Rapunzel was busy, but I wanted to see her. I didn’t know what you had planned. You asked me if I’d like Rapunzel to write me a letter — you’d call her and ask her to do it, you said, and I could pick it up at the end of the evening. I agreed. Off mom and I went, and later, on our way out, we walked into guest services, and sure enough, an envelope with a signed picture of Rapunzel and Flynn Rider was in it. I was ecstatic! I’m sure you probably pulled it out of a file and signed it yourself, but for the purpose of this, I’m choosing to focus on the magic… because it’s Disney, after all.

If you ever read this, thank you, from the bottom of my heart

Thank you for not making assumptions about me.

Thank you for not assuming I was acting like a brat.

Thank you for not judging me or making me feel bad.

I don’t remember your name, but thank you.

Thank you for looking past my meltdown and seeing a young lady who was truly overloaded and frustrated and who believed in every ounce of magic Disney had to offer.

chloe

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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To the Woman in the 99 Cents Store Who Witnessed My 33-Year-Old Brother's Outburst

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My brother, Dar, is a handsome and huge 33-year-old man with autism.

A couple of years ago, he and I were in the 99 Cent Store shopping for groceries and happily hurrying so we could go pick my boys up from school. Suddenly, my brother made a dash toward the dairy section.

Standing next to the milk and butter he clapped his hands loudly, jumped up and down and screamed for joy. I giggled and asked him to please celebrate a little bit quieter.

Then I noticed the old woman standing just behind me. She had her hand on her heart and her face was pale and ashen looking. “Are you OK?” I asked her, feeling concerned.

“Yes,” she answered with a crooked half-smile, “your friend almost gave me a heart attack.” I apologized for my brother’s surprising behavior while my brother smiled at her and showed her the butter in his hand. She was already looking healthier as she smiled at Dar. “It’s fine. But I really did almost have a heart attack. I’ve just gotten out of the hospital for heart problems!” She gave a little giggle and continued with her shopping, as we continued with ours.

That is a very strong memory of mine. The woman had been kind — and she could have died! Yet she seemed to believe that neither her quality of life nor my brother’s, was more important than the other. We should all do our best to be considerate of the world around us. All of us. It’s not just up to the world to be considerate of my brother, and it’s not only up to my brother to be considerate of the world. My brother is learning, and he is challenging others to do the same.

Thank-you so much to the lady at the 99 Cent Store.

We remember you often, and I’m so glad you did not have a heart attack that day.

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This post originally appeared on Autism Answers with Tsara Shelton.

The Mighty is asking its readers the following: Describe the moment a stranger — or someone you don’t know very well — showed you or a loved one incredible love. No gesture is too small! 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.

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How We Helped Our Son With Autism Attend a Birthday Party

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Typically it’s not a hard sell to get a 7-year-old to go to a birthday party with their friends. Unfortunately that’s not always the case when said 7-year-old is on the autism spectrum.

This is further exasperated when the aforementioned party is a play and may involve costumes (or, as my son would put it, “mascots”). For years we’ve had to be creative with sporting events, amusement parks and other venues where some person dressed as a cartoon character may invade my oldest son’s personal space and send him into anxiety and terror.

Some may look at this as a problem.

What we’ve come to realize, however, is that after countless bouts of arguments, tantrums and fits of rage there can be a way. It just takes a little coercing.

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First off: What works for us is when we don’t let him pull the “leave me home with Mommy/Daddy/Grandma” card. He has to know this is an obligation. We explain that we’ve already made a commitment to be there and that it would be socially irresponsible to cancel at the last minute. This gives us an opportunity to teach him a little about social norms as well. We don’t overload him, though. We explain that he can stay in the lobby or towards that back and that he doesn’t have to be where the action is. This at least gets us in the door and eases the transition.

Once inside, we ease him into the activities. By showing up early, we can take a look around and see that it isn’t so scary. We talk to the staff and see if we can get a feel for the environment. We maybe take a staff member aside and explain our child’s developmental needs so they’ll be more attentive.

Finally, once he’s comfortable with his surroundings, we step aside and let him get in his element. That’s when we expect to see some fantastic achievements. Getting him out of his comfort zone will lead to his ability to engage with others and develop his skills and talents beyond his or our expectations.

This post originally appeared on resurgencewebdesign.

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10 Insightful Memoirs About What It’s Like to Have Autism

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If you or a loved one has autism, you know that sometimes the only people who understand what you’re going through are others going through similar experiences.

Here are 10 memoirs about autism written by people who have been there. The list includes some titles our readers recommended, along with a few of our own selections.

Born on a Blue Day Born on a Blue Day: Inside the Extraordinary Mind of an Autistic Savant by Daniel Tammet

Tammet has savant syndrome, an extremely rare condition in which people with autism also have mind-blowing intellectual capabilities. Rather than interpreting numbers as simple values, the way the average mind does, Tammet sees them as colors, shapes and textures. This helps him achieve amazing feats, such as calculating the day of the week on which someone was born based on the birth year and memorizing more than 20,000 digits of Pi. Tammet takes readers on a fascinating journey of his own mind in this moving account of all the colors and textures that comprise his world.

The Reason I Jump The Reason I Jump: The Inner Voice of a 13-Year-Old Boy With Autism by Naoki Higashida

Higashida was nonverbal and just 13 years old when he wrote this series of explanations about living with autism, using a Japanese alphabet grid to compose his words. The Reason I Jump is comprised of short essays, each of which begins with a common question he faces about autism, like “Why do people with autism talk so loudly and weirdly?” or “Why do you ask the same questions over and over?”

Look Me in the Eye Look Me in the Eye: My Life With Asperger’s by John Elder Robison

Growing up in the 1960s, before a name for his diagnosis existed, Robison always struggled to fit in and never understood why. In Look Me in the Eye, Robison chronicles how he acclimated to a world he didn’t understand, from surviving an abusive childhood to dropping out of school to working on Pink Floyd’s sound team to eventually starting his own business — all before he was finally diagnosed with autism in 1996.

Thinking in Pictures Thinking in Pictures: My Life With Autism by Temple Grandin

One of the best-known writers and speakers with autism, Grandin, an animal scientist, explains how her autism enables her perspective as a scientist and how she’s learned to utilize that perspective to revolutionize the way livestock is treated in the U.S.

 

 

The Journal of Best Practices The Journal of Best Practices: A Memoir of Marriage, Asperger Syndrome, and One Man’s Quest to Be a Better Husband by David Finch

Five years into a marriage accentuated with quirks and peculiar routines, Finch was diagnosed with autism. Though he and his wife finally have an explanation for his behavior, it doesn’t make life too much easier. Finch realizes that if his marriage is going to be successful, he needs to be a better husband. In In The Journal of Best Practices, he describes with humor and love how he improved his marriage, one hard-earned realization at a time.

Following Ezra Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love From His Extraordinary Son by Tom Fields-Meyer

After a therapist suggests Fields-Meyer grieve for the child his son, Ezra, “didn’t turn out to be,” the dad sets out to do the opposite: love his child for exactly who he is. This sweet memoir depicts his bond with his son through the first 10 years of Ezra’s life, giving readers glimpses into the tender moments as well as the struggles that accompany raising a child with autism.

How to Be a Sister How to Be a Sister: A Love Story With a Twist of Autism by Eileen Garvin

Garvin’s’s older sister, Margaret, was diagnosed with autism at age 3. This compelling book portrays with humor and intimacy what it was like to grow up with an older sibling on the spectrum and reflects on how Garvin’s childhood experiences with Margaret continue to affect their relationship as adults.

 

 

Life, Animated Life, Animated: A Story of Sidekicks, Heroes, and Autism by Ron Suskind

Just before Suskind’s son, Owen, turned 3, he suddenly became mute, stopped understanding speech and could no longer eat or sleep with ease. Diagnosed with a regressive form of autism, Owen’s only source of comfort was the Disney movies he loved. Life, Animated is his father’s gripping account of his family’s story as they learn to reach Owen the only way they can: through Disney dialogue.

The Ride Together The Ride Together: A Brother and Sister’s Memoir of Autism in the Family by Paul and Judy Karasik

In this unique dual-perspective memoir, Judy Karasik narrates while Paul Karasik uses comics to express what it was like to grow up with their older brother, David, who has autism. Their story follows David from childhood through middle age, divulging a family’s strange inner world that the Karasiks always considered perfectly normal.

I Am Intelligent I Am Intelligent: From Heartbreak to Healing–A Mother and Daughter’s Journey Through Autism by Peyton and Dianne Goddard

In 1980, Peyton Goddard, 6, was diagnosed with severe autism and deemed “worthless” by everyone but her parents. But at age 22, Peyton, who still lacked the ability to communicate or control her body movements, surprised everyone by typing “I am intlgent” on a keypad, revealing a gifted mind that had remained stifled her entire life. I Am Intelligent is a first-hand account of how low expectations and labels can harm children with special needs and urges the importance of treating them as respected members of society.

What would you add to this list? Let us know in the comments below. 

Check out our previous round up of books about disease and disability.

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This Is What It Felt Like To Be Bullied as a Child With Autism

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This is a fictional tale based on my experiences of being bullied as a child. I have Asperger syndrome.

Her name was Lullaby.

Each day Lullaby woke up and smiled gently as the sun peeked shyly through her rose petal-colored curtains.

Her name was Lilly. 

Each day Lilly would wake up and for maybe ten seconds she would be at ease — until she remembered she had school that day. Then the butterflies in her stomach would start to flutter. She’d wonder if the bully in her class had a good morning at home and maybe would go easy on her that day.The sun would peek in through her curtains. She smiled. Maybe, today, the bully would only spit at her.

Lullaby stretched, then pulled her prettiest dress from her closet. She had fairy school that day, and they were going on a trip to the enchanted lake where she and her friends would go on little boats made of tree bark and laugh with the fish. They’d joke with the squirrels and fly with the butterflies. Lullaby could hardly wait.

Lilly pulled on her uniform. She likes her uniform; it makes everyone look the same and seem equal. In her pocket she carries a small pink pearl button that she handles when she gets nervous. She bites her lip until it’s bleeding as she thinks about the trip her class is going on that day. They’re going to a lake to go canoeing. “Wet and cold water,” Lilly thought, with dread. They would be expected to get into small groups for lessons on safety. Lilly prayed Tina would come in today. Tina is Lilly’s best and only friend. She’s also bullied. She likes to read. She’s quiet, shy and, like Lilly, has something called Asperger syndrome.

Asperger syndrome makes it hard for Lilly to say what she feels sometimes and makes some things difficult. She has a gift of being able to talk to animals; they always know what she means. Lilly climbs into trees sometimes, hiding and gently listening for the fairy folk she’s sure left her in this world. Her mother has told her the wiring in her brain is special and that’s why she finds loud noises painful, why too many words at once from a person make her want to run, and why she has always felt like she’s on the outside looking in. She knows she’s special and knows she has a gift the whole world will know about one day. If only the bully would know that.

Lullaby leaves her flower and swings down the stem. She flicks her wings out and flies up and over the meadow towards her school, where her friends cheer to greet her. She’s so lucky, she thinks, to be so popular and to be going on such a nice trip.Her best friend, Story, comes running over excited to be sitting next to Lullaby on the boat. They giggle as they plan their day.

Lilly slams the door and makes her way to school. She’s glad to see Tina up ahead holding her mother’s hand. She hurries to catch up and they plan their day. They decide to try to sit near the teacher. The bully won’t sit nearby. 

The bus draws in and they pile in. The bully pushes to the front to get first pick of the back seats. Lilly and Tina get on, ignoring the bully.

Lullaby has finished her lunch and is dozing, the hum of grasshoppers around her in the grass is soothing and she contemplates jumping on one for a ride. She’s to tired, all played out, and Story has made her laugh so much.

Lilly tries to sleep on the ride home. Tina tries to smile and tells her it doesn’t matter; they will be home soon. She says that no one saw Lilly fall into the mud when the bully tripped her, and it didn’t matter her lunch was ruined. Their moms were clever, she said, to pack double lunches in case they somehow lost their first lunch.

Lilly didn’t answer.

She shut her eyes tighter and knew one day she would tell Tina that none of this was real. That it was all make believe. That she wasn’t really sitting on the bus.

She was asleep in a meadow

Her names was Lullaby.

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