Four Plus an Angel

Life after loss with one teenager, two surviving triplets and a rainbow baby

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My One

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I hope you don’t mind, I am re-posting a very special interview here today.

My daughter, an amazing, beautiful teenager, who just so happens to have autism, shares her thoughts…

What does it feel like to have autism?

Strange. It feels like you can’t do everything that you want to do because you don’t fit in most of the time. You feel like you are trapped inside your own world.

What are some good things about having autism?

I get to go on a smaller school bus that is quieter than a big one. I get to relate with other special needs kids. I can understand little kids with autism more than other people can.  I get to be manager of my high school soccer team and I have a lot of jobs I do to help them.

What are some not so good things about having autism?

Sometimes you have meltdowns. The smallest thing in your routine can mess your whole day up.

Some people don’t understand you.

Sometimes you get helped too much and you don’t need that much help.

I really hate loud noises and fire alarms.

It is hard to know when to stop doing something that you are doing.

What do you want to tell people about your life as a teenager with autism?

I can’t deal with changes as easy as other people.

Autism makes it hard to concentrate.

Autism is an obstacle I have to overcome every day.

Even though it is hard to do homework you can still make it through school. I am getting all A’s and one B on my report card.

What would you tell other kids with autism?

Ask for help when you need it. Use your resources. Get involved in Special Olympics because that is how I made a lot of friends.

Even though you have autism you can still do what you put your mind to.

Autism is just a word, it is not you, it is just one word to describe you.

What would you like other people to know about people with autism?

That we are not different, that we are just the same as you.

We can do everything we want to do when we put our minds to work.

teen with brother

Note from me:

As a mom, this was a bittersweet interview to conduct, painful and hopeful. Ashlyn shares so much strength and wisdom here but what she doesn’t share are the many struggles that make up her every day because she does not even realize they are struggles.

This is just life for her, a courageous, difficult, beautiful life.

Autism now affects 1 in 88 children.

She is my one.

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  1. What a beautiful post, Jessica. It brought tears to my eyes. She is so aware of herself in such a constructive way. I love that she advocates for others with autism She sounds like a great girl, and you are an amazing mother.

  3. What a special and insightful interview. I love this line best of all: “Autism is just a word, it is not you…”. That is a wise young woman you have there.

  4. This is beautiful. Made me choke up. As the mom of a daughter with a brain injury, I know my daughter can relate to a lot of what your daughter says. Although she doesn’t have autism, she struggles with similar things. I just want to tell you that you are doing a wonderful job raising your daughter ~ I know you must be so proud of her.

  5. This is a fantastic post! The awareness you’re bringing to autism and the struggles and triumphs is great.
    Thank you.
    And thanks to Ashlyn

  6. What incredibly wise words. Her perspective will serve her well, for sure.

  9. with a mom like YOU how can she not be super and talented and articulate?

    Her interview pierced my heart with the warmth of her, with the truth she talks about and how she lives HER life. She is not a statistic to me, she is my friend’s child and she is valuable.

    thank you for sharing this with us, it is such a beautiful piece.

    • Oh I am all choked up from this comment Kir because that is exactly what I want her to be, not a number but a lovable, amazing person.

  10. Such an amazing interview 🙂 Your daughter is extremely inspiring… this line got to me the most: “Autism is just a word, it is not you, it is just one word to describe you.”

    So much wisdom in there that I think can be applied to other labels we apply to ourselves or labels that are given to us.

    Thank you for sharing this with us, Jessica.

    • She truly amazed me with all that she said. It makes me think about how much we underestimate people and how everyone should be given a voice. Because they need to be heard.

  13. I love that she says autism is just a word, and it doesn’t define her. She is an amazing person. Beautiful, and strong, post!

  15. This is amazing.
    Thank you do much for giving us a window into your life.
    And you are right, you are just like everyone else.

    • She is, isn’t she. Sometimes I think she is even better, that we have so much more to learn from her than she does from us. Her view of the world is so refreshing, she sees people for exactly who they are and would never say a bad thing about anyone. I can only imagine if everyone were that way.

  17. Such a wonderful post! My sister’s son is suffering from autism but he is such a sweet little boy! He can give so much love! Sometimes it could be really hard, but for those few moments it is really worth!

  18. Thank you so much for sharing your daughter’s thoughts. I love that she said, “Autism is just a word, it is not you, it is just one word to describe you.” Beautifully put!
    P.S. Tell her I really don’t like loud noises either. =)

    • I will tell her that. I think there are many things that bother her that bother other people too but because she has autism it is labeled as being different or something that needs to be “worked on.”

  23. This made me tear up. Not only is she so special, and it’s so obvious here that she is, but I can just see your parenting in her answers. You have done such an amazing job of showing her how to be an advocate for herself and not just a label.

    • I have always told her about her autism as if it is just who she is, like a brunette or someone who needs glasses, and I think that helps her be more okay with it. It is not something to be ashamed of, and she has ultimately grown up proud of it, thank goodness!

  26. Amazing. Simply amazing. I love how she can put it in her own words, but I can only imagine how many things she doesn’t realize, like you said.

  27. “Autism is just a word, it is not you” has to be one of the best things I’ve read today. What a wise daughter you’re raising.

    • Don’t you love it, I just wanted to squeeze her to pieces when she was giving me these answers but I knew if I did she would quit answering the questions :).

  29. This is so touching and so eye opening. What a lovely idea for starting off this month. Thanks for sharing her thoughts here so we could have an inside look into the heart and mind of a teenager with autism. She is a remarkabel young lady. 🙂

  30. Such a fantastic interview with Ashlyn – then and now. I remember reading this back when you originally posted it – still such great words from her. Such a courageous post. She should be proud of herself. 🙂

  31. Thank you and your daughter for sharing this. My One of two (both my sons are ASD), are too young to share there exact feelings regarding this with me. Your daughter has given me a lot to think about.

    • Oh I am so glad, I often think about moms who are not as far along the journey as us. I wish they could talk to my daughter because, somehow, she has learned to articulate so well what it is like to have autism. I wish she could explain this to moms who are working at learning to understand their kids (as I was when she was young) but I can’t talk her into going on the speaking circuit :).

  32. I’m pretty sure I read this when you originally posted it (or at least linked to it at some point), but it remains no less fascinating to me now. I admit to having trouble understanding autism. I’ve often asked my mom and my husband – both educators – to explain it to me, and they do as best as they’re able but it still leaves me confused. So, I’m grateful to Ashlyn for explaining her first-hand perspective so well.

  33. I have a good friend suffering from Aspergers (this is a form of autism as well) and his eldest son was diagnosed by the very same, but even worse condition of this syndrome. He is a hero for me, the way he manages the family’s daily life is just wonderful!

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