When People Say ‘You Don’t Look Autistic’

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“You don’t look autistic.” This is a common statement I hear if I ever tell someone my diagnosis. I use a service dog for my autism and severe migraines, and I am currently training his successor. So people are always curious as to why someone who can walk, speak and seems perfectly “fine,” uses a service dog. Most people assume I am training them for someone else in more “need.” While it is no one’s business, it is a common question.

Service dogs are trained to mitigate multiple different disabilities. Many are visible and many are invisible. Having one or the other or even both doesn’t make us any less disabled. Just because you can’t see my autism, doesn’t make me not disabled. My neurological conditions don’t have a “look.” Autism doesn’t have a specific “look.” It doesn’t usually affect an individual’s physical features. Autism can have physical manifestations, such as motor-skill delays and balance issues. I personally have balance and gastric issues connected to my autism. But even those aren’t “visible” to the untrained individual.

Autism is a part of everything I do. It’s a part of me. I can’t turn it on and off at will. Autism partially makes me who I am, but that doesn’t mean I should be singled out or treated differently. And I honestly prefer to be treated as everyone else. Is this too much to ask? Apparently in the United States, it is quite a bit to ask for. There are autism stigmas everywhere. I believe the new “Sesame Street” character, Julia, even empowers the stereotypes and stigma about how autistics should act. We are all individuals and cannot be stuffed into a tiny box of absolutes. We should be treated as individuals and respected as such.

The stigmas hurt us more than they help us. Every fellow autistic I know and have come into contact with wants to be an individual. They also have strong voices of their own, and they want to be heard. Does this mean every autistic is like this? No, but the adult ones I have met are.

So, the moral of this post is basically to think before responding to someone’s diagnosis. Saying something like, “You don’t look autistic,” is rude and assuming. Don’t put us in a small box. It isn’t easy for many of us to open up to people.

Please don’t make our lives harder with assumptions. Let us spread our wings and be ourselves.

Liz Bernstein.1

Follow this journey on Liz’s Life, Aspergers, Gluten Free and Raw Fed Aussies.

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 Share Your Story page for more about our submission guidelines.

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10 Things to Know Before Our Special Needs Family Visits for the Holidays

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Dear Family and Friends,

We’re on our way to visit with our autistic boys in tow for the holidays, and here’s what we want you to know.

Our lives are a bit chaotic, and we parent just a bit differently at our house for reasons you cannot fully understand. These things may seem odd, different or just wrong as far as you’re concerned. I get where you’re coming from because I used to think the same way, but there really is a method to our madness, and if we’re going to get to be a part of each other’s lives during this holiday season, there have to be some ground rules.

1. Try to be understanding.

We fight every day to make the lives of our kiddos as productive and fulfilling as possible. This means many sleepless nights, meltdowns, IEPs, ignorant educators, medical evaluations, neurological evaluations, testing evaluations, doctor’s appointments, pharmacy stops, short order cooking, ritual habits from before daybreak to after bedtime, countless therapy sessions, driving the equivalent of a super commuter every week and virtually no time for ourselves. We do not need or want your sympathy or praise, but a little understanding will go along way.

2. Don’t be offended or get defensive if…

We stop at McDonald’s before coming to your house to grab some chicken nuggets. My kiddos will only eat a few specific things made a certain way with specific tastes and textures. And no, they will not eat what you put in front of them. We love your cooking, but my boys do not have the same adventurous palates. We are trying to compromise.

Also, my boys sometimes choose to close themselves in a room and play their electronics as opposed to playing with the other children. They do not like lots of noise or stimulation around them. It truly hurts their ears and overloads their senses. If they do come out for snippets of time, we see that as progress. Let them come and go as they please. Enjoy the time they are out and around people. In fact, it would be helpful if you plan on having a safe room set up for them to escape to. You don’t need much in there except an outlet to keep the electronics charged.

3. Try not to react (or overreact) to meltdowns or tantrums.

There is a difference between a meltdown and a tantrum. We have learned that reinforcing tantrums causes more tantrums. Inversely, a meltdown can be caused by a myriad of stimuli occurring around my child. We will deal with these according to the suggestions we have received from our therapist. And no, I don’t want your opinion on how you would deal with a child behaving this way.

4. It’s OK for them not to engage with everyone else.

We allow our boys to sit and watch “SpongeBob SquarePants” the entire time we’re there. Right now it’s their thing, and it keeps them engaged in a way only they understand. No, they don’t want to watch the game. Not to mention all the hoopla surrounding watching the game sets them on edge. Someday, I dream they will be interested in football, but today they are not, and I have come to accept that as a possible fact for the rest of my life.

5. Certain foods (like mashed potatoes) taste great with ketchup.

If my son happens to join us at the dinner table, he only eats the mashed potatoes smothered in ketchup. We take our wins where we can get them, and him being at the table is a win. Did I mention the ketchup? Please buy an extra bottle while you’re out shopping, but in case you forget, I will keep my emergency supply in reserves.

6. Pacing is a fact of life and doesn’t hurt anyone.

One of my boys might start to walk around in circles from the kitchen to the living, down the hall and back around the kitchen. This is called stimming, and it’s his way to manage the world around him. It can be soothing for him to do this for up to 30 minutes or more. You may also want to ask us why and when does he does this. I have loads of answers for you, so let’s discuss them over a beverage.

7. Exercise can be a great, calming activity for my boys.

If you have a trampoline in the yard, this could be used as a very good heavy movement tool for the boys to enjoy. My oldest has been known to jump for up to four hours nonstop. He will tolerate a few additional jumpers as long as they don’t interlope on his activity. These kinds of activities can actually calm him down for hours afterward.

8. Headphones and earplugs aren’t signs of rudeness.

My boys don’t take off their headphones the entire time they are there. They listen to lots of things and sometimes nothing at all, but by having the headphones on, they are able to moderate the volume of sound emanating around them. This helps keep them grounded and balanced.

9. We’re not being rude if we leave early.

If we need to leave early or one of us heads back to the hotel with the boys, we’re trying to be considerate of you and also keep an eye out for their wellbeing. They can really only handle so much of the chaos going on around them. Chaos can be defined as people talking in groups with several conversations going on at the same time, kids screaming and playing tag in the backyard and the general festivities that happen when families get together just a few times a year. Don’t try to keep things down on our account. We knew what we were getting into when we came, and we’ll go with it.

10. Don’t judge, just accept. And talk to our kiddos.

Don’t judge us, don’t belittle our parenting choices and don’t give us your opinion of how or what we’re doing with our kids. Don’t parent our kids for us when we’re around. Just accept us and accept we are here with you, and we’ll be excited and happy to come back again.

Do engage with our kiddos, ask kindly worded questions about behaviors you notice with our kids and take steps to understand a little of what our lives are like. There are some great blogs, Facebook pages and books that share a little about what our lives are like.

With this new understanding, you will help us keep autism awareness alive and growing.

The Mighty is asking the following: Create a list-style story about the holiday season related to disability, disease or mental illness. It can be lighthearted or more serious — whatever inspires you. Be sure to include an intro 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.

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To the Kind Woman in the Waiting Room With My 2 Autistic Children

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Dear woman in the doctor’s office waiting room:

I know you saw me. In my yogurt/banana/snot-stained shirt, chasing my 2-year-old around as he climbed on everything and everyone (from chairs to decorations to unplugging the Christmas tree).

You heard me apologize and explain that my double stroller doesn’t fit in the treatment rooms, so the single stroller had to do, and only one child could be contained at a time.

You saw me desperately drain my phone’s battery playing “Curious George” to try to keep my kids appeased. You saw me switch up who remained in the stroller. You saw me then try and keep my 3-year-old from biting patients. From knocking the magazines off the table over and over again. From hurting himself as he stumbled around.

woman in waiting room playing with autistic child

Then, as he climbed and flipped over the arm of the couch, half on, half off — I saw you rub his back. I saw you play with his feet and make them “bicycle.”

I saw him calm, smiling. I saw you take his hand and walk with him. Hug him. Talk to him gently. I saw this as I desperately rolled the stroller around the room to keep my 2-year-old from screaming and melting down.

I smiled and thanked you. I made sure you knew he could bite. You were unfazed as you hugged my drooling and pinching toddler happily, making him laugh. As we were called back (after an hour-long wait), I thanked you so dearly and sincerely and let you know that you’re amazing. Then I saw you put your hand on my shoulder and say, “You are amazing.”

I felt the tears come from my eyes as I felt genuinely accepted and appreciated and loved by a complete stranger. I never even got your name. But you will never know the impact your kindness has made on this mother of two autistic children. Instead of the usual dirty looks and judgment, I got understanding and kindness — a rare thing in public when you have nonverbal autistic children. You understood. You didn’t ask what was wrong with them. It didn’t matter. You saw that you could help, and you did.

If there were more people like you in this world, it would most certainly be a brighter place. I thank God for you, and I know there are angels out there among us. Thank you.

Sincerely,

A mom who has never felt more accepted and understood

Follow this journey on Emily’s Army.

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. 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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Mom Captures Tender Moment Between Mall Santa and Boy With Autism

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A mom’s post about her son’s sweet encounter with Santa has touched the hearts of thousands of people.

Naomi Johnson’s son Landon, who she calls “L,” has autism. On a recent trip to the RiverTown Crossings Mall in Grandville, Michigan, L shared an intimate moment with the Santa.

Landon spoke with Santa about his autism and how sometimes people think he’s naughty because of it. Santa reassured Landon and reminded him it’s OK to be who he is.

I had an AMAZING experience w the Santa at the RiverTown Crossings Mall and I want to share my story with you:My child…

Posted by Naomi Johnson on Sunday, December 6, 2015

 

Read the full text of the post below: 

I had an amazing experience with the Santa at the RiverTown Crossings Mall and I want to share my story with you:

My child is amazing! He has his quirks and drives me bonkers, but he is amazing! The other day he went to see Santa with the cousins. He said his peace to the old man in red and walked away. While Aunt Brittany waited for pictures to print, he went back to Santa because he wanted to tell him that he has autism. He was flapping his hands, all excited to let Santa know that he has autism.

Santa sat him next to him and took L’s hands in his and started rubbing them, calming them down. Santa asked L if it bothered him, having Autism. L said yes, sometimes. Then Santa told him it shouldn’t. It shouldn’t bother him to be who he is. L told Santa that sometimes he gets in trouble at school and it’s hard for people to understand that he has autism, and that he’s not a naughty boy. Santa told L to not worry and that he has been a very good boy being who he is.

They sat and chatted for at least five minutes. Santa paid close attention and listened to him. This just melts this momma’s heart! My child is a great advocate for himself. But this day was different. He opened up to this person about who he was and he was accepted. He wasn’t a science experiment, like he gets treated when most people find out he’s autistic. He was Landon, sitting with Santa and being told that it was OK to be himself. Mommy tells him all the time that he’s special and I love him the way he was made, but it’s always nice to hear it from others — to be told that it’s OK to be who he is.

We have met a lot of amazing people in our Autism journey, but this one made the top of the list. Shout out to the Santa at the RiverTown Crossings Mall. You are amazing!

Johnson posted the photo to the mall’s Facebook page along with the story on Sunday, and since then it’s been shared more than 10,000 times.

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To the Friend Who’s ‘Moved On’ From My Child With Autism

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We’ve all been there. We’ve all felt it. We’ve been the one left behind, and we’ve been the one who has moved on. It happens in childhood and adulthood. It often happens without cause, without blame. It just happens. Circumstances change, times change, people change. It’s hard, it hurts, but we learn from it and we grow. But no matter what we learn or how much we grow, in that moment, no matter if you are the one walking away or the one watching someone go, moving on can hurt.

A lot of times we see it coming but choose to look away. It is a slow, barely discernable shift. The invites stop coming. The time between phone calls or get-togethers becomes longer. There are new faces, new names, new friends on social media, in the bus seat, at the lunch table. As parents who have lived through moving-on moments, we see the signs, we can tell the change is coming, but somehow, when it’s your kid, you want to ignore the signs, unsure of where the signs will point your child next.

It’s one thing when it’s your heart — it’s a whole new ball game when it’s your kid’s heart.

I saw it coming over this past year, and even though my heart always knew the moment would come, I was still amazed at how much the words took me by surprise. “So, do you still sit with so and so at lunch every day?” I asked while making conversation waiting for the bus. “Not too much anymore, he’s moved on,” my son Ryan said nonchalantly. “Wap!” That was the sound of those signs I tried so hard to ignore smacking me right in the face. Like I said, the signs were there, but I pretended not to see them. My friend Denial had been stopping by again for wine, but as soon as Ryan said the words “move on,” Denial jumped out of the car and boarded the bus with Ryan, and I was left alone to process those words and what they meant.

When your child has autism, when making friends is hard, having a friend, the friend, move on is hard… at least for the parent who watches the friend go. I’m not saying Ryan doesn’t care his friend has “moved on” (just an aside, I was shocked he used the phrase “move on” in the first place); I’m saying he doesn’t talk about it. With the exception of the words, “he’s moved on,” I have no idea how Ryan is feeling. However, I do know how hard it was for him to get here, to have a friend and to be a friend.

For a long time, the word “friend” was known as “The F Word” to me, and yeah, it was as derogatory as that other F-word that rhymes with truck. Most of the negative connotation with the word “friend” was my problem, not Ryan’s. So when the friend came along and stopped, I was elated.

So now that the friend has “moved on,” I may not know how Ryan feels, but I certainly know how I feel, and it’s a mix of sadness and gratitude — but mostly gratitude. Just like a neurotypical kid having a friend moves on, as a parent, I can’t make the friend stay, but I can make sure the friend knows how glad I am he stopped on his way.

So to the friend who has moved on, my first and most meaningful words that I hope you will take with you as you go, are thank you. Thank you for taking the time to stop when many kept going. Thank you for seeing him when others did not. Thank you for trying when others gave up. Thank you for being his friend for years when others moved on immediately.

I knew the time would come when things like Mario and Minecraft would not hold your attention the way it continues to hold his. I knew things like hanging out with friends, going to parties, making new friends, trying new things and maybe even (gulp) girls would supersede Mario taking out Bowser in level 10 of Super Smash Brothers. I knew one day you would want more from a friend than he is able to give. I knew you would move on. I get it, and I’m happy for you. Really, genuinely happy for you.

I’m also happy for Ryan. You stayed long enough to show him what it’s like to have a friend. I’m happy Ryan learned to try and put others first. I’m happy he learned to celebrate your victory rather than cry over his defeat. Whether it was on the mini golf course or on the Wii, Ryan learned to be happy for a friend. I’m happy that after years of not having a friend, Ryan learned what he had been missing, and he learned that from you.

I hope that you learned a little from him, too. Like how to understand and accept people who don’t always fit the mold of everyone else at the lunch table. How to be friends with someone who does not “share personal information,” and how to destroy multiple zombies with your eyes closed on Minecraft.

Eleanor Roosevelt said, “Many people will walk in and out of your life, but only true friends will leave footprints in your heart.” I believe there will always be footprints in each of your hearts representing a time where you and Ryan both stood together. And although you may have “moved on,” you are always welcome to bring your footprints back up our sidewalk where you will find a friend happy to see you again waiting with a can of Pringles in one hand and a Wii controller in the other.

And if that moment doesn’t arise, I want to wish you well and thank you for preparing him for the next friend who will one day leave footprints on our sidewalk and in his heart. Ryan will eventually let that friend in, because I believe you showed him how to open the door.

Follow this journey on The AWEnesty of Autism.

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 Share Your Story page for more about our submission guidelines.

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Viral Photo of Refugee Family Shows How War Has Affected a Boy With Autism

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A recent Humans of New York post has been receiving a lot of attention online.

It features a photo of a refugee family from Turkey with a quote from the mother explaining how the war made it so that she could no longer get autism therapy for her son.

“He cried a lot as a baby. By the age of two he wasn’t speaking or eating. Our local doctor didn’t know what was... Posted by Humans of New York on Friday, December 4, 2015

The text reads:

He cried a lot as a baby. By the age of two he wasn’t speaking or eating. Our local doctor didn’t know what was wrong, but we found a good doctor in Damascus, and he told us that our son had autism. The doctor recommended a therapist. On the first day of therapy, he was too scared to even enter the office. But after a few months of treatment, he was able to concentrate and even write the alphabet. He went to therapy every week for the next few years. It was really helping him. He was learning so many things. But when the war came, the roads were closed. We couldn’t go to therapy anymore. The bombs affected him very badly. He gets scared easily. He’s even afraid of the dark. But the bombs scared him very much. He hasn’t been to therapy for years. We have no money or insurance here in Turkey. We are very isolated. It seems that all the progress has been undone. He used to want to learn. He used to get his books out of the bag and bring them to us. But now he just throws them away. He can’t sit still. I’m afraid that we’ve lost too much time now. But my husband is optimistic. He thinks that we will find the right doctor in America.

Many people expressed concern and showed their support for the family in the comments, including several speech and behavior therapist who even offered to help the family.

I’m autistic and I can read, write, and do all the things ‘normal’ people can do,” wrote Amanda Harris. “There will be hope in America for your son. I did have years of therapy and someone was always holding my hand until the age of 19 but I turned out just fine.”

I am an autism specialist with 37 years of experience,” wrote Ruth Weir Prystash. “If you and your family come to Southern California, I will help you find services for your son. And if you are close enough, I will work with him myself. I will make sure he gets the therapy he needs for free.”

I am a speech therapist and work with children with Autism,” wrote Elizabeth Sherman. “I can help from afar. Get in touch with me if you can.”

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