To the Person Just Diagnosed as Autistic

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So you were just diagnosed as autistic. Or you just figured out you may be on the spectrum. Or you’re just now accepting and embracing your diagnosis. Maybe you were diagnosed in childhood. Maybe you’ve always known. Maybe you never even thought until this very second that you could be autistic. That’s OK. There are so many different variables to autism.

But they are all OK.

It is OK to be autistic. There is nothing wrong with it. You are not broken. You do not need to be fixed. You are more than a puzzle piece. You are not a burden on your family. The world would absolutely not be better off without you, whatever the media may try to tell you.

Your voice deserves to be heard. It doesn’t matter if you are verbal or nonverbal. You have a voice — it’s just a matter of people choosing to listen to it. It doesn’t matter if you talk with your hands, with your vocal cords or with augmentative and alternative communication (AAC). No matter how you talk, your voice is beautiful and has value. Don’t let the world silence you because you don’t meet their cookie-cutter mold of how you should be.

It’s OK if you need to stim. It’s OK to flap your hands. It’s fine to take your stuffed animals places with you. It’s OK to comfort yourself in public. Whatever you do, it’s a part of what makes you you, and it is beautiful.

It’s OK to meltdown, be it at home or be it in public. You can’t control it. You aren’t lesser of a person or have less worth because you are simply overwhelmed. The world is scary — sometimes there are too many sounds and smells and things touching you and it completely overwhelms you.

It’s OK to take care of yourself. To pull away from the world and take care of yourself. Don’t let it get too extreme where you are damaging your mental health; but taking care of yourself is OK. Letting people know you have autism is OK as long as it doesn’t put you in acute danger.

There is nothing wrong with having texture aversions to food. There is nothing wrong with eating the same thing. As autistics, our routine is valuable. It’s OK if you want your routine. It’s OK if you don’t want a routine and it makes you feel more on edge. It’s OK to have a loose routine. And it’s fine if you are involved in something and your routine gets thrown off if it changes.

It’s OK to have your own comforting routines, like listening to the same song over and over, watching the same movies over and over, playing the same video game over and over and reading the same book over and over. These things are always the same, no matter what we try to do to change them, and in a world that always changes, it’s OK to have something consistent.

It’s OK to have scripts. To have quotes. To have things that make you calm and help you communicate. It’s OK to have your interests — the things you fully throw yourself into, whatever they may be. It’s OK to know obscure facts about them. (I know obscure facts about “Sesame Street” and that’s OK.) It’s OK to like things that are deemed childish and too young for you. I refuse to be ashamed of my love for things that are supposed to be too young for me. I fully believe that while there may be a minimum age for some movies, shows, books and games, there is no maximum age, and as long as you enjoy it, who is anyone to judge you?

It’s OK to have your own sensory needs. Be comfortable. Don’t force yourself to dress a certain way because it’s what the world expects you to be like. If you’re the most comfortable in yoga pants and a T-shirt, rock it! Most comfortable in tunics and leggings? You do you!

You may be socially awkward. You may not know how to start or stop talking with someone. You may just wander off awkwardly online or in real life. You may not know how to make friends. Believe me when I say that someday, you will find those friends. It may take some time and it may be a difficult road, but it will happen, I promise. And I’m willing to be that first friend if you need.

It’s fine if you don’t like to make eye contact. People will understand. And if they don’t understand and force you to make eye contact, they aren’t people you need in your life to begin with. It’s OK if you need a safe person, be it a friend, a family member or a care person, to go places with you. It’s OK to be scared. It’s OK to do whatever you need to do.

I don’t need to be cured. I don’t need you to be aware of me. I don’t need you to tell me that the world would be better off without me because I am on the spectrum because guess what? You’re wrong. I don’t lack empathy, and anyone who says we lack empathy has truly never known one of us. In fact, I’ve found my autistic friends to be far more empathic than the ones who say we lack it. In my case, I feel empathy so deeply that I often need to just shut myself off. It’s not that I don’t feel it. It’s that I feel it too much.

Autism is beautiful. Autism is unique. Autism is a part of what makes you you. There is nothing in this world wrong with being autistic. Choose to use first-person language, if that is what you wish to embrace. Choose to be proud of your diagnosis (self or professional). Be open and honest with your friends. Let them know how to be your friend.

And above all, be your own friend and relish in the beauty of your autism.

Follow this journey on A Heart Made Fullmetal.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. 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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Temple Grandin Tells Parents to Stretch Kids With Autism Outside Their Comfort Zones

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Dr. Temple Grandin, Best-selling author, autism advocate and animal science professor, is asking parents of children with autism to do one simple thing — push their kids.

Grandin says pushing children with autism may be the key to their future success. In her new book, “The Loving Push,” Grandin and co-author Dr. Debra Moore offer a roadmap to caregivers on how to prepare youth with autism for being adults in today’s world.

The book includes the stories of eight people on the autism spectrum and chapters on subjects like how to get kids off their computers and how to build on their strengths. The key, Grandin says, is to push them to do things for themselves and to do things that may at first seem scary. While this may be difficult for caregivers, it is ultimately the best way to find safe and fulfilling avenues of interest for their children.

“You have to stretch these children just outside the comfort zone,” Dr. Grandin tells Fox 5 News in the video below. “You stretch just enough so they develop, but don’t go into meltdowns and problems.”

Get more on the story from the video below: 

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To the Store That No Longer Carries My Picky Eater’s Favorite Snack

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Dear Costco,

When we first met, I have to admit I was entranced. You offered so much and so many things, mostly at a discount, in astonishing sizes.

I could get 12 giant rolls of paper towels at one time, gallons of milk at the least expensive price per ounce I could find and stock up on enough canned goods to last for years.

Sure, I could rarely get out of the store without paying a huge bill, but the overall savings and reduced number of shopping trips made it worth it.

You were also amazing about introducing me to new things. Then you would stop carrying the new things or stop carrying the old things. It would be frustrating and disappointing.

And I have now reached my limit for frustrating and disappointing. The issue: dried seaweed.

A couple of years ago you started carrying dried seaweed. It looked like a healthy snack, so I picked it up and it was delicious.

But even more fantastic was that my son, the Navigator, liked it. He ate it as a snack all the time. I was delighted. As far as snack foods are concerned, seaweed appeared to be an all-around win. Plus, it was pretty much the only green vegetable the Navigator would eat.

Then, one day, the seaweed disappeared. When there is something your picky child on the autism spectrum loves, you really need it to be available. In a mild panic, I searched every corner of the store. Repeated inquiries to employees were for naught. The good-for-him snack food that doubled as a secret vegetable was no longer available.

Then I got irritated. Fine. I would find it somewhere else.

Enter Amazon. I had been exploring the benefits of being a Prime member and discovered its “Subscribe & Save” program where items would be delivered to my doorstep on a regular basis. No shopping trips!

Of course, not everything available on Amazon was less expensive than at Costco, even after taking into account the time and driving. But when I saw I could get seaweed delivered monthly, I signed right up.

That’s right, Costco, you have lost me to Amazon as a seaweed-purchasing customer. Plus, some other things, too. Don’t worry, you will still see me now and then — you still have the lowest price per gallon for milk around. I am just going to spend more time with Amazon, that’s all.

We can still be friends.

Don’t smirk, Home Depot. Remember that kitchen faucet you sold us and then didn’t carry the replacement hose? You’re next.

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, 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.

Lead photo source: Thinkstock Images

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When Christmas Is Both Exciting and Anxiety-Inducing for Your Child

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Christmas was my favorite holiday when I was a child. It was a holiday that touched almost every aspect of our culture, both inside and outside the home, in a way that no other holiday did.

Everywhere I would go and everywhere I looked, things would be changed for Christmas, from holiday music and Christmassy store displays to seasonal crafts we did at school.

We brought a live tree into our home and covered it with lights and bright, pretty things. The house would be full of beautiful things I wasn’t supposed to touch or could break easily. There would be unusual amounts of sweets and desserts to eat almost daily.

Our routine would change, and we might stay out late for a Christmas party or drive around the neighborhood in the dark and see the decorations on the houses.

And, of course, there would be the impending break from school and the anticipation of the gifts on Christmas morning. I loved the Christmas season.

My son gets very excited about Christmas, too, but his excitement isn’t always fun for him.

All the changes that take place during the holiday season that I loved as a child can cause him stress simply because they are changes to his environment and to his routine.

He may love that Christmas is coming but still feels anxiety about the changes.

He loves that a break from school is coming but still feels anxiety about the transition.

He loves seeing the neighborhood light displays but can still feel anxiety about being out in the dark and away from the security of home.

He loves that he will get presents at Christmas but may feel anxiety about not knowing what he will receive. Surprises can be a double-edged sword for him.

Days of excitement and anxiety can have a cumulative effect, leading to his “checking out” — just shutting down to block out sensory input — or meltdowns when his sensory overload point is reached.

Over the years we have developed strategies to help him maximize the fun of the Christmas season and limit the anxiety as much as we can.

I know to limit his exposure to Christmas decor and displays at stores following Thanksgiving. (I hate coming across those stores that start featuring Christmas items before Thanksgiving.)

We have a Christmas season routine we try to keep each year so he knows what to expect — things like cutting down the tree the weekend after Thanksgiving, limiting the sugar he consumes, decorating only certain spaces in the house and keeping him in the loop about seasonal activities.

We include him as he wants to be included and don’t force him to participate if we see signs of overload. He may put five ornaments on the tree and then disappear, and that’s OK with us.

He may ask to see the neighborhood lights, but we don’t force him to go out if he doesn’t want to.

Every parent wants Christmas to be exciting for their child. For us, it is a matter of maintaining a balance of sharing the excitement and helping him feel safe.

Follow this journey on Autism Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness during the holiday season, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected]themighty.com. 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.

Lead photo source: Thinkstock Images

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Mom Finds Out Why Son With Autism Wasn’t Afraid of This One Mall Santa

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Santa’s known for being an understanding guy, but we still appreciate when he shows real empathy to the kids who adore him.

Four-year-old Nash Nickerson has been mostly nonverbal until this past August when he began saying a few words. Now, when he sees a Santa, he’ll say, “Santa! Ho, ho, ho!” but his mom, Kristy Nickerson, wasn’t sure if he fully understood what St. Nick was all about. And any Santa in person always scared Nash — until he met the one below.

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Last Wednesday when Nash, who has autism, met a Santa at the Tamarack Centre in Cranbrook, British Columbia, he jumped right on his lap. Nickerson didn’t know what made this Santa different but was just moved to see how the two interacted.

“[Nash] couldn’t answer any of Santa’s questions of what he wants for Christmas,” Kristy Nickerson told The Mighty. “But Santa just kept talking to him in a very hushed tone and was so calm and kind.”

As they left, Santa whispered to Nickerson, “Does he have autism?” When she replied yes, he smiled and said, “So does my grandson.”

“In that moment, I knew why my son was so friendly and willing to just sit with this stranger,” Nickerson said. “I also felt so much relief knowing we weren’t being judged and no one was thinking, ‘What’s wrong with that boy?’ He was simply accepted and seen for who he is… a wonderful little boy.”

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To the Family Waiting in Line for Santa Next to My Special Needs Family

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I’ve seen a lot on the Internet lately about the understanding Santa Claus who played on the floor with a child with autism. I’m sure the little boy’s parents were beyond thankful for what Santa Claus did for their child. As a fellow autism parent, I’m grateful for that outstanding Santa Claus.

I don’t have a story about an understanding Santa, but I do have a story about some understanding people. Yesterday was the first time a stranger help me out in this way. It was the first time that not everyone was staring at me in disgust. I actually had some “angels” nearby who helped me when I needed it the most.

After church on Sunday, I took the boys to see Santa Claus at the mall. I walked hand in hand with my oldest son, Trenton, sweating bullets in anticipation of not knowing how it would go. My parents were walking with my youngest son, Andrew, so my focus was on Trenton.

I was so proud of the way he walked hand in hand in the mall with me right to the Santa Claus line. Unfortunately, we were about 30 seconds late of being able to walk right up to Santa Claus. I just wanted to scream, “No, please stop. Let us go first,” as I watched two other families beat me to the head of the line.

Just as I expected, Trenton was not going to wait. He kept pulling his body away from me, making his upset noises, throwing himself down on the ground, kicking and trying to grab everything in sight. His noises grew louder and louder. I didn’t focus on anyone around me other than Trenton. I took Trenton out of the line while my mother stood in line holding our spot. Within seconds, the people in front of us said that we could go ahead of them. What? Someone actually understands and is not judging me.

“Thank you! Thank you!” I kept saying over and over. Never before in my life did I want to hug and kiss complete strangers.

“Oh thank you. You don’t know how much this means to me. He has severe autism and can’t help it,” I said.

One lady looked at me with empathetic eyes and said, “Trust me, honey. I completely understand.”

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Trenton sat on Santa’s lap, and I did get a picture of the boys with Santa. However, what happened after they sat on Santa’s lap got everyone’s attention in the mall. Trenton wanted the animal the photographer was holding to get the children to look at the camera. We caused a scene. I can’t even begin to describe what happened but it happened. My purse flew off my shoulder and all of the items in it dumped out while I trying to handle Trenton. I ended up having to pick him up and carry him out parallel to the ground with kicking legs and swinging arms. I think everyone could hear his noises, cries and screams bouncing off the walls in the mall. Thank goodness for my mom, who was picking up the pieces after us such as his shoes, toys, etc.

After getting in the van and strapping Trenton into his car seat, he continued to fuss and cry. I couldn’t help but ask myself, “Was that even worth it?”

Well, the answer is yes. Yes, it was worth it. The smile on his face walking into the mall was priceless. It was more than worth it.

To the family who let us go ahead of them, thank you. You will never know how much that meant to me. Your act of kindness and empathy was exactly what I needed. It’s not easy taking a child with a severe hidden disability out in public. For once in my life, we had someone help us and not judge us. Thank you, thank you! You gave me the best Christmas gift I will get this season. I wish I knew who you were and where you lived because I would love to bring you a gift to show you my appreciation.

Follow this journey on Two Brothers, One Journey.

The Mighty is asking the following: Write a letter to a stranger or someone you don’t know well who showed you incredible love during the holiday season. 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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