Often I can tell it’s going to happen—even before the words come out of their mouth. In fact I have to fight the urge to place my finger over the lips of the well-meaning, but oh-so-ill-informed, person and whisper, “Shhh!” But since I can’t shush every relative, friend, acquaintance and complete stranger who has something to say about my kid, who has Autism Spectrum Disorder (ASD), I’ve come up with this handy list of things never to say to us parents. Here goes:
1. He doesn’t look autistic.
A variation on “he looks normal,” this kind of comment presumes you know what autism, or for that matter normal, looks like—which you don’t. Autism or ASD is referred to as a spectrum disorder for a reason: No two people with ASD look or behave in exactly the same way. Individuals with autism are just that—individuals—and should always be treated as such.
How to be friends with a child who has autism 2. I knew something was wrong with her.
Maybe you did; maybe you didn’t. In most cases, a trained team of professionals join forces to determine a child’s diagnosis so there’s that to keep in mind. But, more important, this comment isn’t only presumptuous, it’s hurtful. You may be dying to say, “I told you so,” but ask yourself: would any parent really want to hear that?
3. Have you tried green tea?
Or a gluten-free diet or floating in a hyperbaric chamber or, go ahead and fill in the blank… Autism and the ability to Google are not always an ideal match. It’s worth keeping in mind, before you send us that link to the latest online miracle cure, autism is a disorder, not a disease. There is no cure. And if there were, don’t you think we might be the first to know?
4. Will he ever go to university?
Or hold down a steady job, be in a relationship, live independently? Again, fill in the blank. What’s true about there being no cure for autism, goes double for a definitive prognosis. No one knows what the future holds for a child on the spectrum. That includes experts, inveterate Googlers and—news flash—all of us parents and our kids.
5. What is her special talent?
From outdated movies like Rain Man to more up-to-date TV series like The Good Doctor, popular culture would have us all believe that autism comes with built-in special talents or superhero powers. This is true in very few cases. Like most everyone else, kids on the autism spectrum have their own unique strengths, but that by no stretch of the imagination means they are all undiscovered child prodigies.
6. I don’t know how you do it.
A variation on similarly backhanded compliments like “God doesn’t give us more than we can handle” or “you must be such a great parent.” The implication here is that parents, too, have superpowers. What we have, in fact, is a tough job and the persistent hope we can keep doing the best we can.
7. I didn’t think your child would be comfortable at our birthday party.
This, invariably, comes too late—after a child has been left out of an event he might have enjoyed if some simple accommodations had been made. The assumption that children with autism don’t want friendship and social interaction is one of autism’s most unfortunate myths. The question you should ask yourself before you exclude a kid with autism from your party is: Whose comfort are you really worrying about?
8. Don’t play the Autism Card.
9. She’ll outgrow this.
As mentioned before, there’s no way to predict a prognosis for a child with autism and while some people on the spectrum “do better” than others, no one can pin down how or why… or even what “better” means. Once again, the goal for any child with autism is simple and similar to the goal for all children—to reach their full potential, whatever that may turn out to be.
10. I’m so sorry.
If you’re thinking, but what’s so bad about expressing sympathy?, well, nothing. But this kind of comment has more to do with context and tone than the words themselves. Unfortunately, some people have a knack for making even a seemingly harmless “how are you doing?” sound like the end of the world. Besides, parents don’t want pity. Neither do our kids.
So what do we want to hear?
“What can I do to help?” is a good place to start. Just make sure your offer is direct and genuine. And, incidentally, don’t let lists like this scare you off—even if it can be difficult to know what to say, even if your foot does occasionally end up in your mouth, feel free to check in on how we’re doing and let us guide the conversation. We’re stressed and overwhelmed a lot of the time and we could often use a listening ear. Let us tell you about our surprising, unique, wonderful kids. We want you to have the chance to understand and accept them the way we do.