5 Things Aspies Wish Other People Understood

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Hi there! I’m Catherine, and I’m a proud Aspie. It makes me who I am.

There are a lot of misconceptions about being on the autism spectrum. Today, I want to tell you about some things I wish people understood about us Aspies. I wrote a bunch of examples on a piece of paper and decided to share my top five decisions with you. Remember — everyone on the spectrum is different.

These are five things I personally wish people understood about having Asperger’s syndrome.

1. Sometimes we, too, can be nonverbal

I say this because “verbal” is often in people’s descriptions of Asperger’s syndrome. But we, too, are on the spectrum, and when we shut down or have a meltdown we can be nonverbal. We may even come off as “lower functioning” during this time, and that’s OK. We all react to an overwhelming sensory overload in our own way. Those who loves us most know what we need or don’t need in that moment. Please understand even though we are “higher-functioning” we also have moments where we’re not. That’s OK.

2. Don’t listen to the media.

The media doesn’t always speak the truth. Journalists are most likely not professional doctors, and they’re often not even speaking to doctors who know about the autism spectrum. Just because someone is a “loner” doesn’t mean they have Asperger’s syndrome. Asperger’s syndrome isn’t something that makes someone kill somebody else. We will not shoot up a school. Please understand we are empathetic. We experience feelings too. We just have trouble expressing them. Sometimes, we feel the others’ emotions to an extreme. We can sense what you’re feeling before you tell us. 

3. There’s more to it than what you see.

Yes, we have may trouble socially, but other challenges can exist. Some of us may have a learning disability. For example, I have Central Auditory Processing Disorder, which means I can’t process what I hear the way others do. Sometimes I need to tell people to write on a piece of paper or look at me when they talk. People with Asperger’s may also have digestive problems, ADD/ADHD and/or sensory issues. We may have hypo- or hyper-sensitive hearing, touch, sight, smell or taste. There’s more to a diagnosis than what’s commonly acknowledged, so please understand these other common challenges.

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4. Socializing isn’t easy.

I’ve learned that not everyone is going to talk to me. I have to make the first step too. In my first semester of college I told myself I wanted to make a friend. I only had one class this semester because my anxiety was so high. This was five years after I’d graduated high school. I sat next to a girl in the computer lab and decided even though I’m not a purse girl that I would compliment her purse in the hopes that she would say something back. Maybe we could talk. I practiced this for weeks until one day I just decided to do it. My voice was shaking, but she said thanks and I responded with a question about the class assignment. We kept talking and ended up in the next three classes together. After three years, we’re still good friends. Yes, we want to have friends too; it’s just hard for us to make the first, or even the second, step. Sometimes we wish people were a little bit more understanding and realized we don’t always want to be alone. 

5. Stimming isn’t only for the kids.

I’m 26 years old, and since I was 7 have been doing the same thing when I get overwhelmed with hyperactivity, when there’s a thunderstorm, when I get anxious, when the sensory overload begins.  That’s OK. Now that I’m older, I sometimes can acknowledge a situation and be able to handle myself, which means I stim to avoid a meltdown or shut down. Remember, Aspie kids grow up to become Aspie adults; we don’t grow out of Asperger’s syndrome. Some of us may be able to be more subtle about our stimming and some of us sometimes cannot. Please understand, stimming helps us, and it’s OK to do if it doesn’t hurt us.

If I could add a number six it would be that most of us who understand, love and are proud of our diagnosis don’t see it as a disability. We wouldn’t ask for a cure. I’m one of those Aspies who would never ask for a cure. I am who I am, and I’m on the autism spectrum. I’m an Aspie. I’m unique, and I may have certain challenges in my life, but I wouldn’t change it. I’m proud of myself, and I love who I’ve become. A cure isn’t needed because I’m not sick. 

Of course, every life experience is different for each individual. I just wish others would take the time to understand the people they know on the spectrum.

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17 Autism-Related Tattoos and the Wonderful Stories Behind Them

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Bumper stickers, T-shirts, ribbons — raising awareness for autism comes in many forms. Some people, though, opt for a more permanent route when it comes to bringing acceptance to the condition they care about. We’re talking about tattoos. Below, 17 people shared their autism-awareness ink with us and then explained what their design meant. Some feature the popular rainbow-colored puzzle piece, a symbol adopted in 1999 as the universal sign of autism awareness, according to The Autism Society. Others feature poems and quotes that have taken on new meaning since an autism diagnosis. All of them, though, have one thing in common: acceptance.

Take a look:

1. “I had the puzzle pieces encased in a shield because as the father of my children, I’m their protector. I fight for them. I had it placed on my forearm for all the world to see because I am not ashamed.” — Jon Leger

JonLeger

2. “We got our matching tattoos on April 2, 2014 to mark Autism Awareness Day for our beautiful boy. It’s green as that’s [his] favorite color.” — Janine Lomax

3. “My daughter is nonverbal autistic, and I dedicate the Rascal Flatts song ‘I Won’t Let Go’ to her. [She] loves to swing on the swings.” — Samantha Tabala

Samantha Ranzie Tabala

4. “It just symbolizes the love and support I have for my brother.” — Marrisa Coyle

Marrisa Coyle

5. “I’ve flip-flopped between what I want to do with my life, but one day I was fortunate enough to meet a young individual [who] was diagnosed with autism. When I met him it was like a light turned on. I spent the next five weeks tutoring him and teaching him how to play music. It was the most fun and rewarding thing I had ever done.” — Cody Thompson

CodyThompson

6. “I count my blessings every day. One of those blessings is my son and the gift he has given me, which is an opportunity to see the world through his eyes.” — Kathy Hooven

Tatto reads: “The meaning of life is to find your gift. The purpose of life is to give it away.”

7. “As a whole, the piece is a reminder of that day I found out my son was different and everything he has gone through to get where he is at today. To take something so painful and turn it into something beautiful.” — Jorge Porras

Jorge P

8. “It is dedicated to my students who have taught me more than I could ever teach them.” –Katie Doherty

Katie Doherty

9. “I was 15 when I had her, and two months after birth she was diagnosed with optic nerve hypoplasia (completely blind). When she was 5 years old she was diagnosed autistic. So, I chose to put her name in braille to represent her main diagnosis, and her middle name is Irene, which means ‘peace’ in Greek.” — Connie Bonilla

Connie Bonilla

10. “There are a few reasons I got my tattoo. The first being my best friend’s younger sister has autism. The second reason is for my soon-to-be nephew, who is on the autism spectrum. And the third reason is a personal one. The phrase ‘look past limitation’ stood out to me immediately when picking out my tattoo. I have spina bifida, and my whole life has been overcoming the obstacles that come with it.” — Felicia Spataro

Felicia Spataro

11. “One of my best friend’s son has autism. I put [my tattoo] where I did so more people will see it and ask me about it to spread awareness!” — Terin Garrett

Terin Garrett

12. “I’m not ashamed of my little brother’s disorder, nor would I trade him in for any ‘normal’ person in the world.” — Alex Weldon

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13. “I got it for my sister, Skylar, whom we found out had autism when she was 4. She turns 15 in about two weeks and starts high school in August. She’s the light of my life. Ariel is her favorite princess, and the name is in her handwriting.” — Alex Adkisson

Alex Adkisson

14. “My brother was diagnosed when he was 2, and it has a huge impact on my family’s life. It also reminds me that even though life hasn’t been easy… the situation has made us close as a family.” — Abby Crouch

Abby Crouch

15. “My youngest son was recently diagnosed with autism and I am afflicted with a rare disease called Behcet’s. I want whoever sees my tattoo to know, even though we [have] these conditions, we keep our heads high and live life to the fullest. Every day life hands you struggles, but you can rise above them and find the great joys in life, too.” — Amy DiMonda

Amy DiMonda

16. “I got this poem tattoo because my sister is nonverbal but has been writing beautiful poetry from a very young age. This poem is featured in a book that my sister and my mom wrote titled “I Am In Here: The Journey of a Child with Autism Who Cannot Speak but Finds her Voice.” The poem is right in the front cover of the book, and I got the tattoo in the same exact font as it appears in the book.” — Gale Bonker

Tattoo reads: “I sometimes fear That people cannot understand That I Hear. And I know That they don’t believe I go To every extreme To try to express My need to talk. If only they could walk In my shoes They would share my news: I am in here. And trying to speak every day In some kind of way.”

 17. “The tattoos are both ways to honor my son and open a door to discuss autism with someone who might not know about it or who might want to know more about it.” — Diana Gatrell Anderson

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 Do you have an autism-related tattoo you’d like to share with us? Send a photo and the story behind it to [email protected]




17 Autism-Related Tattoos and the Wonderful Stories Behind Them

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30 Autism Parents Describe Their Kids' Bizarre and Funny Eating Habits

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Being a parent to a child with autism comes with its own special set of challenges, one of them being keeping your kid fed. Children on the spectrum can have some seemingly peculiar eating habits, so we at The Mighty asked our readers what unusual, outrageous and funny food requests they’ve received from their kids.

With autism, ritual is important, so for these parents, no food request is too difficult, too strange or even too gross to make a reality. They’ll do whatever it takes to keep their kids happy and healthy.

30 Autism Parents Describe Their Kids’ Bizarre and Funny Eating Habits: 

1. “When my son was little and eating junior baby food they changed the style of the jar. I had take the meal out of the new jar and and put it in an old jar or he would not eat it!” — Lori Stuart Francis

2.Ketchup on everything. Including his peanut butter and jelly sandwich.” — Myndie O’Hare

3. Frozen waffles ([kept] frozen). Frozen peas, frozen blueberries… always gotta have a theme with autism spectrum disorder.” — Kelly Smith

4. “When [my daughter] eats a turkey sandwich it must be put together like a sandwich, but she won’t eat it that way, she pulls it apart and eats it separately. However, she won’t eat it if it’s not made as a sandwich first.” — Lauren Cockrell 

A quote from Lauren Cockrell that says, "When [my daughter] eats a turkey sandwich it must be put together like a sandwich, but she won't eat it that way, she pulls it apart and eats it separately. However, she won't eat it if it's not made as a sandwich first."

5. My son just likes to put Sriracha on everything. Cereal, pasta, yogurt, you name it.” — Shelley Friesland

6. My son thinks salsa is a beverage.” — Lisa Natham

7. “My son loves chicken nuggets, and he eats a 20-piece. One time they only put 19 in the box. Needless to say, this did not go well.” — Tonya Warren

8. Cereal with sprite. Sour cream on eggs. A raw onion.” — Jessica Bowen

9. “My son made a graham cracker cheddar cheese s’more… and ate it!” — Jodie Tompkins

A quote from Jodie Tompkins that says, "My son made a graham cracker cheddar cheese s'more... and ate it!"

10. “My son is now 10, but because I introduced him only to healthy food to start with, that’s all he continued to want for years after. So, we would go to the mall and get something like, say, KFC with the family, and my son would order a bowl of green peas. Everyone always stared at us in horror, like we were punishing him. I had to keep offering him chicken loudly so they knew we weren’t withholding it!” — AJ Madams

11. “[My son] would carry a box of ‘Mac n Cheese.’ Didn’t want to eat it, just talk to it.” — Teresa Watts

12. My son only eats tan, room temperature crunchy items — chips, crackers, etc. If two crackers are stuck together he won’t touch it because ‘it’s broken.’ Been on this ‘diet’ for the last two years and still going strong! Somehow he keeps growing and he’s of a healthy weight.” — Jami Leavell

13. “My daughter loves Cheetos dipped in cherry yogurt.” — Judy Echeagaray

A quote from Judy Echeagaray that says, "My daughter loves Cheetos dipped in cherry yogurt."

14. A butter shake: a whole stick of butter and milk and ice.” — Ililani Foree

15. “Food may only be served in either a ‘Lightning McQueen’ bowl or plate.

16. Lemons are my 11-year-old’s favorite fruit.” — Erin Howell Sharpe

17. “My daughter used to dip brownies in ranch dressing.” — Mika Clardy

A quote from Mika Clardy that says, "My daughter used to dip brownies in ranch dressing."

18. “My son is now 21, but still every Friday he has to have a pineapple pizza. It doesn’t matter where we are in the world, he has to have it. When he was younger it was a cause of great distress if we couldn’t find anyone to make one whilst on holiday. I have even taken to buying tins of pineapple and asking pizza shops just to make a plain pizza and add my pineapple to it.” — Jane Parker

19. My son will not eat broken crackers. I eat them.read somewhere those ones have zero calories… really, he’s helping me out.” — Kirstin Aitken

20. “Ketchup with cereal… I stopped asking questions long ago.” — Lindsay Rose Jolly

A quote from Lindsay Rose Jolly that says, "Ketchup with cereal... I stopped asking questions long ago."

21.I made my son a sandwich with turkey, cheese and lettuce. He took it apart, put it in the ‘correct’ order and then ate it.” — Betsy Burnish Gibides

22. “Mine would only eat eggs if they were dyed green. Whatever it takes, I guess!” — Katherine McBrair

23. Everything has to be mushy. He won’t eat anything that’s in chunks or pieces. So everything he eats takes a trip through the food processor. The only exception to this rule is French fries. Those are fine as is.” — Cindy Webb

24.My son was obsessed with salt. He would attack and steal the salt shakers, dumping them out on the counter and eating the salt. We used to have to hide them. Glad that has passed.” — Karen Cleghorn

25. “[My child] loves Reese’s peanut butter cup cereal, but you have to put milk in, let it soak, then take the milk out.” — Jeanine Spano

A quote from Jeanine Spano that says, "[My child] loves Reese's peanut butter cup cereal, but you have to put milk in, let it soak, then take the milk out."

26.All bread items were to be dunked in water before he consumed them.” — Trudy Leal

27. “[My son] likes to dip his Triscuits in milk.” — Marissa Collins

28.Grape jelly on scrambled eggs.” — Kimberly Phillips Nelson

29.Ice cream cones… just the cone, no ice cream! I think it’s the cold because she also doesn’t like ice in her drinks.” — Aimee Lackey

30. “My son orders his burgers like this: ‘I want a plain burger, just bun, burger, bun, with nothing on it. Bun. Burger. Bun.’ I love that. Also, his school lunch is always what we call ‘meat in a bag.’ Ham in a bag with bread in a separate bag, and he eats them separately… [He] says ‘I’m just not a sandwich kind of guy,’ as his answer to anyone who questions him.” — Lauren Swick Jordan  A quote from Lauren Swick Jordan that says, ""My son orders his burgers like this: 'I want a plain burger, just bun, burger, bun, with nothing on it. Bun. Burger. Bun.' I love that."

Does your kid make elaborate and funny food requests? What are the best ones? Let us know in the comments below!

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How a Music Venue Made My Son With Autism Feel Included at a Concert

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My 16-year-old son with autism has two loves in his life: teddy bears and music. He likes the same Top 40 pop songs most kids like; it’s something he gets lost in. He dances with his head. Sometimes, his body is so rigid that other people think he’s awkwardly swaying. With padded headphones, which don’t cause him sensory discomfort, and an iPod, he does his own version of musical head-banging. He’s happy.

Over the years, we have included Andrew in nearly everything his siblings do. At 5 feet, 10 inches tall, he may no longer be the cute little boy I could scoop up into my arms during a meltdown in the supermarket, but he belongs in our community. 

This year, he wanted to go to a concert just like his sisters always love to do. And I’m talking about a concert in a big outside amphitheater. Fortunately, we can sit in a box, which provides some privacy from being knocked over by other people dancing.

I called Diane, one of the managers of the venue (the Xfinity Center in Mansfield, Massachusetts), and told her about Andrew. She was excited he was coming to a show and invited him for a private visit the day before. It was a simple act of kindness. She took an extra step to set him up for success and feel as included as everyone else at the venue.

Andrew, our behavior therapist and I made our way to the music venue on a Friday. Andrew was clutching his oldest and favorite teddy bear. Upon our arrival outside the gates, he was greeted by Diane and her warm smile and calm and kind words.

She took him everywhere. She showed him where he would enter at a restaurant to eat first. She even asked him what table he wanted to sit at. Then she showed him the private restrooms he would use, walked him around the arena and showed him our seats, explaining how loud it would be the next day. We reminded him that’s why he was bringing headphones and could ask for a break anytime.

She then showed him another space in one of the on-site offices. It was where some of the police working details congregated at the end of the night. It wasn’t fancy, but it was away from the noise if needed. It was a novel, creative accommodation for a venue that had been open for 35 years. Andrew left excited, and we listened to the music we would be seeing live on the way back home.

Laurel Collins the mighty.3-001

On concert day, we were led by Diane to the table Andrew had selected in the restaurant. She had placed a sign on it that read “Andrew’s friends” and decorated it with a teddy bear. The venue staff — from hospitality to security — had all been prepped for Andrew’s visit. Being a worried mama, I didn’t want him to get lost and not be able to ask for help. As we were eating, Diane approached Andrew, who was sitting with his bear, and introduced him to her teddy bear “Ozzy,” a rock-and-roll bear wearing a leather jacket and holding a guitar.  She gave it to him, saying Ozzy would be happier with him and his bears than at her house.

You could see the joy on Andrew’s face seeing the singers whose songs he knew and dancing in his own way. Taking it all in was hard for him, but there was a smile on his face. Yes, there were walks and breaks needed. Thanks to Diane, however, and the fact she took time out of her life to make him feel prepared, Andrew had the night of his life.

This is what inclusion is. It’s about including a child with special needs with kindness and joy and not out of a sense of obligation. “Ozzy” and Andrew’s bear have become good friends and have now gone to two more shows together. Andrew has become the “mayor” of the venue and the staff treats him with dignity, respect and kindness. You can see how relaxed he is when someone says, “Hi, Andrew.” These are the people he feels safe with.

Music brings many of us joy. It brought Andrew to a new place where he’s able to do what other kids get to do. Thanks to Diane, who set him up for success, he not only can access live music, but have fun. Seeing him happy and truly included makes my heart smile.

The Mighty is asking the following: Tell us about a time someone went out of his or her way to make you and/or your child feel included or not included. 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 “Share Your Story” page for more about our submission guidelines.

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To the Mom Worried Her Child With Autism Isn't Meeting Milestones

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In the beginning, they ask, “Is your baby rolling? Crawling? Babbling?” Then the questions become, “Is he walking? Eating well? Potty-trained? And what if, at those moments when he’s “supposed to be,” he just isn’t?

Your worries take over as a mommy. You wonder, did I somehow fail?

These feelings are real. It feels like you spend forever waiting and wondering, staying awake late into the night with a strong prayer: “Please just let him catch up.”

If you’re like me and have broken the search engine for answers with tears of worry in your eyes, know this: It’s OK. We need to stand strong and support our children, even if they aren’t necessarily fitting into those set milestones.

If you’re going through it now, I’m here to say: The beginning is most definitely the toughest. Be the Mommy, Daddy, Best Friend, Advocate, Teacher and Hero for your child  but understand that above all, he will teach you more about yourself than you will have learned in all of your years on this earth.

Where do you go from here? You choose positivity — it’s what floats hope. And when they ask those questions, smile, Mama — breathe and do what you need to next. Walk away, laugh and nod, go home and scream into your pillow, and then hug your boy. Promise you’ll stand by him, protect his individuality and celebrate him. He’s wonderful, beautiful, kind, gentle and smart. Anyone too ignorant to see that falls short of those qualities themselves.

Don’t try to make him what you thought he would’ve been. Embrace him, for he is much more than you ever hoped for.

Don’t be afraid to say with pride, “He has autism.”

If he wants to spin, spin with him. If he wants to dance, dance with him. Scream, hug him tightly. Laugh with him, and be thankful he’s different. After all, who would want to be the same?

Your child will hopefully go through life empowering others to step out of their small generalist boxes and become something special.

As Dr. Seuss said, “Why fit in when you were born to stand out?”

'Why fit in when you were born to stand out?' -Dr. Seuss

Signed,

One Proud Mama

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Mom Finds Her Autism Awareness Sign Vandalized

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Eliese Livingston, from Sandy, Utah, has a 5-year-old son, named Kyler, who has autism and limited communication skills. Because of this, Livingston put a sign on her car reading, “Autistic child may not respond to verbal commands,” to let first responders and others know about Kyler, KSL News reported.

On Tuesday, July 14, Livingston found that someone had vandalized her car and the sign by adding words of their own to it.

sign reads "Autistic child may not respond to verbal commands" Others have written "spoiled brat," "unentitled," "undisciplined."

Stickers reading “Spoiled Brat” and “Undisciplined” were placed near Livingston’s autism awareness sign, as well as the misspelled word “Unetitled.”

It’s just appalling, all of it,” Livingston told KSL News, “He will struggle for his entire life and people want to make fun of it?”

In addition to filing a police report about the vandalism, Livingston also used this as an opportunity to talk to her neighbors and educate them about her son’s disability.

Get the full story in the video below: 

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