her brother dan on a swing Every day, people ask me what it’s like to have a twin brother on the autism spectrum. I understand many people are just curious, but sometimes the questions and comments can be a little too much to hear; I don’t always mind hearing them myself, but it bothers me when people make insensitive comments in front of my twin brother, as if he isn’t there. He is more than capable of paying attention to conversations and then thinking about them later.

Here are five questions or comments people have asked or made in the past:

1. What was said: “Wow, you’re twins? You must feel lucky you weren’t the one who ended up having autism.”

What I would rather hear: “That’s really fascinating that you are twins! You must teach each other a lot of things.”

People have actually made the first comment in front of him, as if he wouldn’t understand. I know this would be hurtful to hear. By instead saying we could learn a lot from each other, that would remind him he is important and has a lot to offer. After hearing this, I would obviously be bragging about how good he is at swimming and his iPad games, as well as his knowledge of movies, Disney and art. I would also make that person be aware of how silly and sweet my brother is.

2. What was said: “He doesn’t even look like he has autism.”

What I would rather hear: “He looks like a handsome and sweet guy with an awesome smile!”

This is better to hear because, first of all, what does having autism look like? If you have met one person with autism, you have met one person with autism. No child or adult is exactly alike. Hearing positive things, rather than a random stigma, about a family member is a terrific feeling.

3. What was said: “What is his specific savant skill? Kids with autism are all really good at at least one thing, right?”

What I would rather hear: “What types of things is he interested in? What does he enjoy doing?”

This is better to hear because not every person with autism has a savant-like skill, and that can be tricky, as a family member, to have to explain. By asking what his interests are, it shows you want to know more about him and understand autism is different for everyone on the spectrum.

4. What was said: “Do you think he will ever drive a car, have a girlfriend or be independent in any way?”

What I would rather hear: “I bet he will have a bright future, full of many independent tasks and good people.”

This is better to hear because no one knows what the future holds. Trying to guess what it will be like from today’s moments is not an accurate depiction of what it will be like, nor is it fair to Dan or anyone else. When I’m asked about it, I usually just respond with, “I really hope so.” It’s a nice feeling when others are hopeful along with me and they feel confidence that he will do well.

5. What was said: “Does he melt down a lot?”

What I would rather hear: “When he is upset, in what ways does he personally try and cope with that feeling? What can we do to help?”

This is better to hear because even those of us who do not have autism have our own individual ways of coping with anger, sadness or frustration. My brother would probably feel embarrassed if I went into details about his meltdowns and stimulatory behaviors to people who don’t really know him well enough to have seen them for themselves. This question also shows the person is trying to understand how an individual with autism may react to certain situations or try to make himself or herself comfortable. This concern can be discussed in a way that will educate the curious person on what makes an individual with autism feel more comfortable in a situation where they are feeling sensory overload, without completely belittling the person.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post [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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If I could take it away…

If I could take it away, maybe your life would be easier.

If I could take it away, maybe you wouldn’t have to struggle so much.

If I could take it away, maybe you could be able to talk.

If I could take it away, maybe you could say, “I love you, mama.”

If I could take it away, maybe you wouldn’t be so frustrated.

If I could take it away, maybe you would make friends easier.

If I could take it away, maybe you would sleep more than a couple of hours a night.

If I could take it away, maybe you wouldn’t have your sensory issues.

If I could take it away, maybe you wouldn’t get so overwhelmed by your surroundings.

If I could take it away, maybe you wouldn’t have food issues.

If I could take it away, you wouldn’t be you.

If I could take it away, I wouldn’t.

If I could take it away, I really wouldn’t because I love you for who you are. Autism is a part of you, a part of your personality, a part of your character, and I’d never change you.

Baby boy, you are perfect.

Boy in striped blue and white hoodie standing outdoors

Follow this journey on Gym Bunny Mummy.

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


Dear Elizabeth,

Well, you were right — it was an autism spectrum diagnosis.

You know what else you were right about? That everything is going to be OK; that this is the first step on a path that is going to good places for your son; and that the struggles he has experienced were neither your fault nor his.

The lightness you feel? That is the weight of guilt and worry off your shoulders.

There is more, too. Once you and your husband figure out what your son, the Navigator, needs, you are going to work as a better team than you ever have.

There will be curveballs. That job you love? You will quit it; you love your son more. Those plans you made? You will put them on hold or even make new ones, some of them better and more fulfilling ones.

Yes, there will be a sense of loss, but really only the sense of loss that comes with the learning curve of taking on new challenges — losing the feeling that you knew what you were doing and the comfort of the rote.

Honestly, though, how was thinking you knew what you were doing really working for you? Not so well. With this re-learning, things will work better.

But not perfectly — don’t expect a diagnosis to solve everything. It won’t. There will still be challenges, difficult ones that will last for years. There will be things you will have to let go of as you accept who he is.

There will be fights you will fight for him — and you will find you will be more able to fight for him than anything you’ve fought for.

You will gain important new perspectives and make friends you have never met. You will broaden your compassion and understanding.

Your life will become rich and full in a way you never dreamed, much different than you ever imagined. For now, take it one day at a time. Things will be a little chaotic until you settle into the new reality.

Be kind to your husband, your son and yourself. Be patient with family who may be confused or dismayed by the diagnosis — they will come around and be supportive.

You will feel like you need to learn everything at once. Do the best you can and follow the school’s lead. They have a lot of knowledge and will guide you as they work with your son.

Because you were right: everything is going to be OK.

Love,
Me

Follow this journey on Autism Mom.

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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


A letter to myself, as I learned who I was.

Hello, Abby!

I know you are feeling scared right now, but believe me, you are going to be OK. I know you just found out we have autism. It’s probably scary. But we are going to make it.

Right now, you probably don’t even know what this means. You’ll go home and research it. I would say not to, but it won’t stop you so, don’t take in too much. The information you read is an overview of autistic people. It is not who you are. You don’t have to try to fit or mold yourself into a box or shape you don’t feel like you fit into.

I’m not going to say people aren’t going to push you, because they will. They always will. People don’t understand that you may not want to fit yourself into their molds. They want you to want to be the same as them. Even now, as I sit here, I have read and heard several things in the last few days about how we need to cure autism, and it just makes me pause and thing, why? And I know that is how you feel right now. Why is this happening to you. Why can’t you be normal, as you always fought to pass as. As you push your tears away to allow yourself to keep up the mask that keeps you hidden from them, their eyes sliding through you like you aren’t even there. As if you are just part of the illusion they see every day.

And I know you make yourself part of that illusion. You hide yourself in their taunts and whispers so you can look as “normal” as possible. You don’t have to do that. And yes, I know you aren’t going to listen to me, because what 12-year-old listens to anyone? But hey, might as well try.

I have one more thing to tell you. Your parents, our parents, are not exactly going to be able to give you the support you need. They try, they do. But they aren’t going to understand you very well. Nobody is. You are going to have friends who drift away, who can’t understand who you are, and yeah, it’s going to hurt. And what people call you is going to hurt. I know you don’t understand why they are cruel to you. I know you don’t know how to make it stop. And I still don’t know. Because the human species is confusing. People are hard to read, and they change so constantly that it is difficult to keep up. And it hurts.

You’re going to feel like everything in the world is painful for you. And it might just be. But it’s not forever. You are going to be OK. I promise.

Sincerely,
Who we are now

The Mighty is asking the following: Write a letter to yourself on the day of the diagnosis. 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


Dear Taylor Swift,

It has been nearly two decades since I took pen in hand (figuratively) to write to a celebrity. Then, it was an up-and-coming boy band from Florida that was performing at the Mark of the Quad Cities. I, the generous manager of a men’s clothing store, wrote the five boys to let them know I understood how hard it was to go shopping now that they were famous. I kindly offered to come into work before or after the mall opened to allow them to shop without being swarmed by fans. They never showed. I expect similar results here.

So why am I, an almost 40-year-old adult, behaving the way an 8-year-old girl might? Because I need to say thank you. I’m not going to thank you for the things I’m sure other people thank you for. I do constantly see online how great you are at recognizing your fans, like this and this or even this.

I don’t have a daughter, so I’m not going to thank you for being a seemingly good role model. Let’s be honest, I’ve got serious #squadgoals because of you. That’s right, isn’t it? I’m almost 40, so I’m not hip to the lingo. None of these are the reasons I am writing to thank you.

Several years ago, I had two children who had difficulty with speech. One was delayed and unable to engage in conversations, and the other was eventually diagnosed as nonverbal and with autism. It was, and can still be, emotionally overwhelming at times. And yes, your music can be the perfect pop antidote, but it’s still not the reason I want to thank you.

My oldest, Brady, entered preschool unable to form sentences. He had speech therapy, occupational therapy and physical therapy. We saw little improvement for many months. The therapists talked about taking him to be tested for autism. And then “Love Story” began to flood the airwaves, constantly played on the radio and on VH1. And it became Brady’s favorite song, being requested on a constant loop most days.

And then, he started singing it. He grabbed the keyboard he had gotten for Christmas and he sang along — not just words, but sentences. He knew all the words to the song, words I didn’t even know, and he sang them. Our jaws dropped.

Each song released from that album elicited the same results. Eventually, the keyboard was replaced by a plastic guitar, and we watched VH1 constantly in hopes of catching one of your videos in order to DVR it, which we were then requested to watch over and over.

Soon after, speech blossomed and kept blossoming. Now, six years later, my husband and I are generally exhausted at the end of the day from the constant chatter that fills our household.

My second son, now 8, has autism and doesn’t speak, so I don’t have stories of how your music inspired him to sing along… yet. However, I can thank you for what your music has done for him as well. Autism brings its own sensory challenges, and in particular, cutting his hair can be extremely difficult. We’ve cut his hair at home for the last several years, and every month, it’s a challenge. The only beacon of hope comes when we turn on YouTube and allow him to watch music videos during the cut. He gets distracted, and for a moment, it’s not so hard. Your music in particular draws his attention away from our task and quiets him, if only for a few minutes.

bobblehead of nsync member next to framed photo of two boys
A photograph of Kelly’s two sons.

So there you go, Taylor Swift. I am thankful for you and your music because of what it has done for my children. And if by some very small chance, you actually read this, I hope you keep providing the perfect soundtrack for my family — and for our Friday night dance parties, even if the 10-year-old won’t admit to participating in them.

P.S. That group that I wrote to in the 1990s? It was *NSYNC. I understand you, too, are a fan.

A version of this story first appeared on Quad City Moms Blog.

The Mighty is asking the following: Share a powerful moment you or a loved one has had with a public figure. Or, write a letter to a public figure who you feel has helped you or a loved one through his or her work. 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.


Sometimes meeting new people can be hard, and this is especially true if you have autism, but why? In the video below, I talk about my own experience with this.

If you have any ideas about videos or subjects you’d like me to do, send me an email at [email protected]

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