Home > Autism, Disability Rights, Special Needs Childcare > I Know It Was Meant Well….

I Know It Was Meant Well….

I’d like to start off by saying I’m sorry for calling out a total stranger in this post.

I know there are parents out there who will wonder why I’m picking on a mother whose intentions were obviously good. And there are autistic people who will think I should be much harsher in my judgement, who will want to remind me that good intentions are not enough to excuse hurtful words.

But this isn’t about a person. It’s about an action. You could even call it a behavior. This mother did something hurtful without being aware of it, and I had to bring it up, to caution others against the same mistake.

It’s a chilly day, but my client’s grandfather takes us to the beach anyway. She loves swimming, but also enjoys just playing in the sand. This is one of my “severely autistic” clients– 9 years old and completely nonverbal– no speech, no sign, very occasional use of a handful of words via iPad. She’s clever, though. But then, I think all my kids are brilliant 🙂

We put out a picnic blanket, and we play. We make a big pile of sand and take it down again. She rocks and flaps and squeals with delight. Because she’s generally very sensitive to touch, it’s never occurred to me to offer her any physical contact besides the basics– holding her hand, helping her dress, that kind of thing. But her grandpa comes over to tickle her, and to my amazement, she loves it. So I tickle her too, and the three of us laugh.

It’s a late autumn day in San Diego, and there are plenty of people in the water despite the cold: surfers and boogie boarders in wetsuits, a handful of children playing in the shallows. A boy about the same age as my client has finished swimming and sits a few yards from us with his mother, wrapped in a towel.

His mother comes over, and I’m a little surprised when she speaks to me.

“Hi! I’ve been watching you playing with your daughter, and I just wanted to tell you that you’re doing a wonderful job,” she says, “My son is like her, and I know that it can be so hard. But you’re doing great.”

I know. She meant it as a compliment, and as a moment of parental solidarity. She was thinking that I probably get a lot of weird looks or glares or criticism from other parents, and she wanted to offer me something different. And I appreciate that.

But there’s one problem, and you may have missed it.

She said that it was “so hard,” obviously referring to raising an autistic child. That’s unfortunate, but understandable. Raising any child is hard, and raising one with disabilities is often harder. Or maybe she didn’t even think it was that hard, but assumed I did.

That wasn’t the problem.

The problem was that she said it right in front of the child she was referring to.

In front of a child who cannot speak in her own defense, cannot ask for reassurance that she’s loved, cannot ask “what did that woman mean when she said…?” A child who has probably overheard a million times that she is difficult, or a problem, or heartbreaking, or any number of other variations on the same theme.

And that is unacceptable.

I know it wasn’t meant that way, that the mother had no intention of hurting the girl’s feelings. She probably didn’t realize even it could hurt the girl’s feelings, and that speaks to an even bigger problem.

She just assumed that the child in front of us couldn’t understand, or wasn’t paying attention. Maybe the girl was looking into the distance and humming, which typical kids do when they are not paying attention. But most likely, it was just the fact that the girl was obviously autistic. That alone was enough to make this mother fail to notice that she was saying something hurtful in front of the person she was talking about.

This tendency to talk about children in front of them isn’t limited to autistic kids, I know. Plenty of adults talk about neurotypical kids, too, and say unkind things in their hearing. That isn’t right either. But disabled children are so much more vulnerable, so much more likely to overhear that they are a burden, a tragedy, a hopeless case. That parenting them is so hard. And they take it to heart.

I suspect most of us remember how awful it felt to disappoint our parents, or make them sad, or believe that we made life harder for them. Do you also remember how easy it was to get that impression from a single sigh of frustration, a shaken head, a few snappish words? How long did you worry and fret over a single criticism or an argument you overheard your parents having? What if people often said you were so hard to raise?

How often does my client hear that? How much does she understand? I have no idea. But I’m pretty sure it’s more than most people think. And because she has no way to tell me, I must assume she is understanding, paying attention to, and worrying about everything.

I wasn’t about to get into all this while babysitting, especially since that conversation might also hurt my client. So I did what I always do at times like this. I did my best to counteract any possible negative effects. I gave my client a huge hug and a big smile.

“Actually,” I told her, “I’m not her Mom, I’m her aide. And she is the best kid ever! I adore getting to spend time with her. My clients are all wonderful kids and I’m very lucky to have them in my life.” There was a brief pause, as (I suspect) each of us considered our own surprise at the other’s words.

We exchanged another pleasantry or two about how much the kids love the beach, how soothing the water is for them, then said goodbye. But the experience left me feeling shaken. Shaken by how easy it is to overlook something like this, how often our words have impacts we never consider.

So please, pay close attention to your words. Assume your children, your clients, your students are always listening. Assume they understand everything you say. Think about how you, as a child, would feel if someone spoke those words in front of you. Around nonverbal kids in particular, be vigilant. Someone’s self-image may depend on it.

  1. July 3, 2016 at 4:08 pm

    May I share? This is so important


    • Restless Hands
      July 3, 2016 at 5:56 pm

      Of course!


  2. July 3, 2016 at 5:42 pm

    Heck, I even saw a dog react to an adult conversation like that once. A DOG.
    The encounter went a little something like this:
    The dog was a Yorkie, and it had a persistent biting problem. It kept nipping my hand, and I kept telling it “No biting”. After a few such nips, I told the owner that the dog knows it’s not supposed to bite (it was old enough to know better). Instantly, the dog stopped biting and slumped with a forlorn little expression on its face, like it knew it was doing something it wasn’t supposed to do. I think that dog had self-monitoring issues and did understand what I said about its biting habit. In other words, that dog was smart enough to understand fairly sophisticated human conversation.
    The take-home lesson from incidents like this is that you can never be certain an individual won’t understand what you are saying if they have the sensory modalities to do so, and for sure most nonspeaking autistic kids do. Also, what is often said about autistic kids is far worse than what I said about that dog, and no doubt many children are hurting because of that. And that doesn’t even account for what happens if one of those kids sneaks onto the internet and reads, say, their mommy’s ranting blog about how it’s so hard to parent them, not to mention seeing videos posted of their own meltdowns and embarrassing bodily functions. Those kinds of articles are upsetting to me enough as an autistic and they aren’t even about me (I was diagnosed with Asperger’s), they are about autistics who can’t talk. Just because someone cannot demonstrate certain outward abilities does not mean they don’t have those abilities on the inside.

    Liked by 1 person

    • July 3, 2016 at 5:48 pm

      By the way, I also talked in front of a sea lion at a zoo once, referring to it as a “lazybones”. It wasn’t long after that that the seal slunk into the water, likely ashamed of being seen as “lazy”; after all, it is likely the zookeepers called them that sometimes, and the seal could have learned that word. Again, it is never wise to assume that your charges understand nothing of your inflection or what you say; if animals like these can do it, it seems to me it is more likely a human will. After all, humans are likely better primed than any other animal to understand complex human communication (excepting the types of on-the spot cues that animals like Clever Hans have famously read – I am not sure even some neurotypical humans can read those, even if they can read subtle emotional cues, and I believe those are two different things), as it was designed with us in mind.


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