15 Things Not to Say to the Parent of a Child with Special Needs

From the dreaded phrases to avoid to the right questions to ask, here's the best way to support a parent whose child has special needs.

Jamie and Liam
Courtesy of Jamie Pacton

Over the last seven years, I've had many well-intentioned people say terrible things to me about my autistic child or my parenting of him. After reading the writings of autistic adults, talking with other parents, and reflecting on my own experiences, I've built this list of 15 things you shouldn't say to someone whose child has special needs:

I'm sorry.

Having a child with special needs is not a tragedy, and it's not something you need to express regret over. My son is alive, healthy, and happy. You wouldn't apologize to other parents for the existence of their kids, so don't do it to parents of kids with special needs.

Parenting your son must be so hard, I can't imagine how you do it.

Parenting any child is hard, but when we signed up for the job of parenting, all of us—no matter who our kids are—agreed to the ups, downs, caregiving, teenage years, and everything else in between. How do I do it? I'm like any other parent. I take it one moment, one day, one year at a time, and try to learn from my mistakes.

You're really amazing to take care of a child with special needs.

I'm not amazing; I'm just a mom who's doing her best, and I wasn't handpicked for this job. Telling parents of kids with special needs that they're amazing reinforces the idea that their child's condition is a tragedy that only "super" parents can handle.

It's too bad you had to put your life on hold.

I've not put my life on hold. Like many other parents of kids with special needs, I'm still working, doing things I love, traveling, getting together with friends, and making plans for the future.

Have you tried a cure?

When my son first got a diagnosis, I read "recovery" narratives and sought a cure. But eventually, I internalized the idea that autism means a different neurology. Like cerebral palsy, Down syndrome, and other special needs, autism is part of a child's make up—not a disease to be cured.

This is just temporary, right? Your child will "get better" as he/she gets older.

My son is not going to recover from autism because autism is the way his brain works. Sure, he'll change as he gets older, but the idea of "getting better" is wrong-headed and reinforces his condition as disease, not difference.

He/she looks normal. Are you sure he has special needs?

Although my son may not look disabled—he's not in a wheelchair and doesn't have other visible markers of disability— he still has special needs. Many kids have "invisible disabilities," and they shouldn't have to prove them simply because the world cannot see them.

Your child wouldn't have meltdowns if you disciplined him.

There's a huge difference between a goal-driven temper tantrum and the meltdowns kids with special needs face. These meltdowns are caused by sensory overload, an inability to communicate, and many other sources, and they're qualitatively different than temper tantrums.

Saying nothing, but staring.

Our kids aren't exhibits at the zoo. They're fully human, and they deserve respect. Please don't gawk if my son has a meltdown in public, or if you see a child who looks different, is in a wheelchair, or has medical supports.

Using the R-word or other abelist language/derogatory terms.

The R-word is never acceptable, and many common terms also shouldn't be used. As one advocate put it: "Disability metaphors abound in our culture, and they exist almost entirely as pejoratives. You see something wrong? Compare it to a disabled body or mind: Paralyzed. Lame. Crippled. Schizophrenic. Diseased. Sick. Want to launch an insult? The words are seemingly endless: Deaf. Dumb. Blind. Idiot. Moron. Imbecile. Crazy. Insane. Retard. Lunatic. Psycho. Spaz." Now see why I don't want to hear about the "crazy" thing you did last weekend or what an "idiot" your boss is?

It's too bad your son can't talk/communicate.

My son is non-speaking, but he absolutely can communicate. His behavior speaks volumes, and talking is not the only form of communication.

Your child is lucky that you're his voice.

I'm my son's advocate for now, but I don't want to be his voice. My job is to help him develop his own voice via communication methods like RPM or typing. My son may not talk, but he has a voice. My job is to listen to it, not co-opt it.

You should share more specific details about your son's challenges in order to help other parents.

I worry all the time about protecting my son's privacy. Just as kids with special needs are not exhibits to be gawked at, their toughest challenges, personal hygiene details, toileting struggles, and other such things are not for the public, no matter how "helpful" they could be.

Your child seems low-functioning, not like those high-functioning autistic kids/geniuses I've read about.

Don't use labels like high- or low-functioning in relation to my child because they carry harmful implications and assumptions. Call him by his name. Describe what he does. Don't tell me he's "low-functioning."

You must be really scared for the future. Did you hear about...

Of course I worry about the future, but so does every other parent I know. Telling me stories about adults with special needs who have been mistreated, abused, or worse doesn't help alleviate those fears. I weep over those stories privately; let's work together to build a better future.

So, what can you say to the parent of a child with special needs? Simple.

Ask us: "How are you?"

Or tell us: "I'd love to hear some positive things your child is doing lately."

Or just say: "I'm here. How can I help?"

Those words will go a long way, believe me.

Jamie Pacton lives near Portland, Oregon, where she drinks loads of coffee, dreams of sailing, and enjoys each day with her husband and two sons. Find her at jamiepacton.com and on Twitter.

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