Some of the things that people say to parents of children with autism, or to people with autism in general, can be unknowingly painful. Sometimes even illogically so. Most often, it’s just because we’ve heard it so many times. It’s not even you, specifically — it’s you at the end of a long list of others.
But if you’re reading this, thank you. It means you care enough to want to know what autism is, and how the words you use might negatively impact my daughter and my family.
Here are some of the things that I wish you knew about my daughter before passing judgment or making a comment about her autism.
1. She’s not choosing to behave like this
Social deficits and inappropriate behavior are two reasons my daughter even has a diagnosis. It’s what she works on every day. Saying “Stop doing that” is like saying “Stop being autistic.” Punishing her for her actions is like punishing her for having a disability.
2. No, all kids do NOT do this
Yes, I get that you are finding a reference point to better understand the context and make it relatable. But telling me all kids are picky eaters, for example, does not explain how a child could actually choose to go three days without any food because only orange-colored food is acceptable. It’s a question of degree. Picky eaters in general don’t have a disability. Picky eaters who will literally starve to death before eating that do.
3. Yes, girls CAN be autistic — mine, for example
Though it’s less common, it’s not uncommon for a girl to have autism. Sometimes, the solitary nature of some “traditional” girl play activities (like dolls, for example) makes social isolation seem less noticeable. Getting a diagnosis for girls can sometimes be more difficult as a result.
4. Behavior skills can be location-specific
If you’re visiting my home, you may see Lily at her best. Happy and chattering away to herself as she watches “The Wiggles.” She knows where everything is and where everything goes. She knows what she can watch or read or do. It’s safe. So, if you see her and think that her ability to navigate her home setting can somehow be extrapolated to venue X … yeah, no.
5. “Meltdowns” are not the same as “Tantrums”
We don’t punish meltdowns. They aren’t something that can be controlled, especially by a child too young to understand that they’re nearing their limits. We provide therapy to help them recognize when they’re reaching their limits. When they need space. How to cope. How to calm down. But getting there is a long road.
6. Kids don’t “look autistic”
They don’t look NOT autistic, either. It’s a neurological condition. There are some behaviors that may (or may not) manifest themselves to clue you in to the possibility of the condition, but try to hide your surprise that a child “doesn’t look autistic.” It’s rude.
7. She won’t “grow out of it”
She won’t “get over it.” She is, and always will be, autistic. The adult with autism you see in front of you probably needed years of therapy to engage you in what you consider a “normal” conversation. And they’ll probably need time alone at the end of the day to decompress from the stress of “fitting in.” They cope with it. They adapt to it. They deal with it. They aren’t cured of it. They aren’t “over” it.
8. “I don’t know how you do it” is not a compliment
I know you think “I don’t know how you do it” is a compliment of my parenting, but the way it sounds to a possibly overly sensitive parent is “How can you TAKE that?” Whether it’s repeated questions, or spills, or screams, or lack of sleep, of COURSE you know how we do it. We’re parents. It’s what being a parent is. You love your kid, no matter what. You do your best for your kid, no matter what. Love is independent of diagnosis.
9. Your assumption is probably wrong
So many different abilities fall within an autism diagnosis. Just saying the word “autism” really means virtually nothing until you get to know a particular person with that diagnosis. Diagnostic labels can be really wonderful ways to access therapy and accommodations for children with autism, but they can also make outsiders overlook those same children because of their assumptions about what “autism” is. The word gives them a knee-jerk snapshot of that child’s life and potential that may be completely wrong.
10. Talking doesn’t mean communicating
And not talking doesn’t mean not communicating. Often, my daughter engages in “scripted” conversations. She repeats words from something she knows and loves, or even one of the “lectures” that dad has given her countless times. She may respond appropriately with a script, or she may just like replaying that particular bit of information in her own voice to calm herself. She may ask the same question to you over and over despite you answering the question already. Yes, she’s talking. But the goal isn’t necessarily to communicate. On the other side, she may be giving nonverbal cues without saying a word. These may be passing right over your head.
11. Nonverbal doesn’t mean my child can’t understand every word you say
Talk to her like you’d talk to any kid her age. If it doesn’t work, I’ll help, but if you want to talk to her … talk to HER. She gets excluded all the time. She’ll notice if you include her.
12. They don’t know what causes it
Don’t ask. It wasn’t that my wife didn’t provide love. Or that I’m an engineer. They don’t know. So I don’t know. Nobody knows. Ya know?
13. Don’t dictate your label preferences to me
My daughter with autism?
My autistic daughter?
I’ll let her decide that for herself or, failing that, I will decide for our family. What I decide will come from a place of love and will be well-researched. I don’t care how you refer to yourself, your loved ones, your students, or whatever, and I’ll gladly use your preferred label in reference to you or them. But when I’m talking about my autistic daughter, Lily, don’t interrupt to tell me that I need to use “my daughter with autism, Lily.”
14. Yes, I read that too
I’ve been raising my daughter since infancy and of her 11 years, at least 8 of them have been with a formal autism diagnosis attached. I’m constantly reading blogs, finding white papers, following links, and watching news stories about autism. I’m not saying that you can’t catch lightning in a bottle and pull out some obscure yet helpful post that somehow escaped me, but it seems unlikely given your 20 minutes of Google research. I don’t mean to sound snarky — thank you for caring enough to look into it. But yeah … I read that, too.
15. Don’t say “It’s OK”
If I ask Lily to do something as simple as “say goodbye” to you when you leave, don’t tell her “Oh, it’s OK” when she doesn’t immediately respond. I know it can feel awkward, like you’re the reason she’s getting into “trouble.” But if I ask her to do something, it’s because it’s something I want her to do. If you say “it’s OK,” then she’s getting mixed signals. Sometimes it takes her a little extra time to process. She knows expectations, even if they’re only polite greetings and responses. And she works very hard to improve those. Conflicting signals will just make it that much harder for her to understand when she should answer and when she shouldn’t. It’s a consistency thing.
16. Eye contact is unimportant to me and uncomfortable for my child
Many people with autism struggle to understand facial expressions. There’s a lot of data there. A lot of social meaning. Sometimes, eye contact is appropriate. Sometimes it isn’t. It’s not easy to parse the rules of socially appropriate eye contact to someone who interprets things as literally as some people with autism do.
I once listened to a therapist describe eye-contact therapy: making a person with autism maintain up to 10 seconds of eye contact. It doesn’t seem like a big deal until you try it with a stranger. Now, imagine that a person with autism is being made to do this as therapy, and that they may not be able to fully grasp when it is, and is not, socially appropriate to make eye contact. What may be appropriate with a teacher or friend at school may not be appropriate with a stranger on a bus.
17. Don’t tell me you’re sorry
Autism comes with its specific struggles, just like everything does. But I’m not grieving Lily’s life, and she sure isn’t, either.