She Doesn’t Look Autistic
“She doesn’t look autistic.”
“Are you sure?”
“Autism is just the new ADHD.”
“Oh, I would have never known.”
“But she’s so pretty!”
These are all responses I have heard when I first tell someone about my daughter’s autism diagnosis.
I am always walking a fine line when it comes to telling people.
It’s not because I’m embarrassed or don’t want to talk about it. I am a proud mom and autism is not a bad word in our home (disability in general is not).
No, I usually don’t want to because of the ignorant comments that come from people.
I think most of them mean well.
“She doesn’t look autistic” is meant to make us feel better.
If she doesn’t look disabled, life will be easier for her or people will accept her disability better because she doesn’t look different.
She is labeled as high functioning. Which basically means no one knows she has autism until I tell them.
Almost every person I have told has been shocked.
Some question how we got the diagnosis…was the person qualified enough?
A few have told me she will grow out of it. Others have told me how they don’t believe in autism so it must be something else.
Several tell me she doesn’t look autistic (insert eye roll). Most of them say I’m sorry at some point in the conversation.
It seems a high functioning label just means it looks fake.
I usually feel uncomfortable telling people. Because she doesn’t look disabled it always seems like I am awkwardly inserting her diagnosis into a conversation.
A lot of the time it feels like I am looking for sympathy when I tell them or that I want her to be treated differently than other kids.
I actually want her to be treated just like everyone else. Easier said than done, she doesn’t act like other kids or think like them so really she can’t be treated like everyone else.
She needs special accommodations to be able to participate.
Other times it feels like I am excusing a behavior, “oh she’s crying hysterically over that because she is autistic not because she’s a brat.”
Talking about it to friends makes me just as uncomfortable as telling strangers.
It seems like I am either just complaining or looking for sympathy. Or that all I talk about is autism…which could be true, its a huge part of my life.
When I do talk about it, I don’t talk about the hard parts of autism. It’s even harder to find a good time to bring them up.
When a friend asks how things are going, I respond with good, or pretty good, how are you?
I will add in something about her art class or how physical therapy is going well.
I can’t imagine the reactions if instead I said, ‘well, she hasn’t pooped in 5 days so we are in panic mode. A couple of days ago she developed a new fear of wind. I ran out of batteries for all her emergency flashlights so she cried for an hour and she suddenly won’t eat 4 of the approximately 10 foods she eats.
Oh, and because she has decided to physically hoard on her person we had a 45 minute fight about how many pairs of pants is too many to wear at the same time.
The thing is, just because you can’t see it does not mean it isn’t there.
Autism affects every part of our day.
Decisions on what to eat or whether to stop for a gallon of milk. Does that store have alternating colors of tiles on the floor? Will that be too loud? Is she sick? Tired? Was it the orange Gatorade?
Pre-watching movies so we know if she can watch it. Packing 2 suitcases for an overnight trip because she needs her important things when we travel.
“She doesn’t look autistic” isn’t very comforting because whether she looks it or not…she is.
Written by, Noelle
My name is Noelle. I’m 35, married and the happy homeschooling mother of 2 amazing kids (ages 16 and 8). Our youngest is on the spectrum. We do our best to live in the now with sarcasm, love, laughter and a whole lot of caffeine. Follow our journey on Instagram at live_love_learn_stim.
Interested in writing for Finding Cooper’s Voice? LEARN MORE
Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.
I hear you! I hear you because this is where we live too. We live between grateful my daughters symptoms aren’t worse because someday she may be able to live on her own, and frustrated that it seems only my husband and I can see every struggle and every major milestone that we want to cheer about. It is lonely. Thank you for sharing so I know we are not alone!
Yes! Yes! Yes! You are speaking my language!
I have a high functioning 12 year old with Autism and autism anxiety. She’s extremely intelligent, but socially awkward. And I’ve gotten to the point where when people question “why isn’t she interacting with the other kids?” “Why is she hiding in a corner?” That my response has become, “that’s Gracie.” And let them draw from that what they will. Its easier than saying “well she has autism and she is overwhelmed by the amount of kids and the noise that comes with them.” Cause of course the response is always a surprised gasp/sigh, followed by “but she speaks and goes to regular school.” And that of course leads me to have to lecture on how autism effects her.
That and she already feels different, she hates when people know why she is different. I keep telling her everyone has some kind of issue, but this is her current one.
It doesn’t matter though. She has a beautiful soul that has a love of animals, can sing like a nightingale, has a small group of friends that has literally gone to bat for her, and loves her family better than anyone I have ever met. She is my saving Grace!