What Not to Say

I really enjoyed reading a post, over at Autism Island, called “50 Things You Should Not Say to Autism Parents.” While Katie and I have not experienced all fifty, we can certainly identify with a number of them. A few really stuck out for me, so I thought I’d repost them and offer some comments.

He just needs to apply himself more. We hear this often at our school. We have been told that one or another of our ASD kids is just “lazy” or “making poor choices.” One teacher went so far as to say, “Well, not all kids are cut out for school,” and then suggested that we should just settle for the Cs and Ds that kid was getting. Usually this was in the context of our being denied services that we knew our kids needed.

The problem with this statement is that there is a lack of understanding that a lot of kids with ASD, especially the highly verbal ones, tend to seem so much more “together” on the outside than they really are. Teachers and guidance counselors don’t get how hard the kids are working to maintain this image, even as they struggle in whatever subject happens to be their weakness. They “look so normal” that it’s easy to think that they’re unmotivated. But on the inside, they are a bundle of anxieties, worries, and frustrations–something that only we parents get to see once our kids come home and are in a safe environment where they can let it out.

He doesn’t have autism, he has discipline problems. We got a variation on this one from a visitor to our church one Sunday. The kids were having a particularly hard time focusing and were feeding off each other’s sensitivities. After Mass, this fellow walked past us and muttered (loud enough so I could hear), “Those children need discipline.” He didn’t say it to my face. He didn’t offer any other words of advice or understanding. He didn’t ask any questions or try to get to know us. Just a drive-by shooting. In a house of worship. Nice.

Discipline isn’t the issue for ASD kids as much as it is sensory overload. Kids on the spectrum are trying to process everything coming at them, and for many, the need to “act out” is pretty high–especially when the environment is stressful. When this happens, the last thing you want to do is discipline your child, as if he or she were willfully misbehaving. That only adds to the kid’s sense of otherness and raises the risk of anxiety and depression. The better response is to help the kid calm down or to give him a safe place where he can expend all that excess energy–or to help him find a more socially acceptable way to de-stress.

Are you sure he has autism? He seems fine to me. To which we often reply (in our heads, of course), “Come spend a couple of days at our house. Then we’ll talk.

Again, “seeming fine” is something people on the spectrum spend a lot of time and energy doing. Many have gotten really good at it, but it is exhausting.

Please trust us parents. Please don’t think we’re paranoid or overly anxious. When a parent says “My child has autism,” believe them. Ninety-nine percent of the time, there is a valid diagnosis behind this statement–a diagnosis made by a trained psychologist with far more years of education in this field than you have. Ninety-nine percent of the time, that diagnosis was made after scared and concerned parents brought their child to this professional because they could tell that something just wasn’t right.

No one wants to hear “Your child has autism.” No one wants to face such an uncertain future. Chances are, we did not come to this diagnosis joyfully or eagerly. More likely, we came kicking and screaming, hoping it was something else, something that could be grown out of or medicated away. Chances are, too, that we don’t relish having to tell people about it, but that we do so reluctantly and only when necessary.

I hope I don’t sound too defensive or combative. My goal is not to complain. It’s to give a little window into the challenges we face as parents of ASD kids. I know that oftentimes these comments come from good hearts and innocent intentions. I know, too, that as awareness and acceptance increases, statements like these will decrease. That’s why I’m sharing this. The more people understand autism and the way it affects a family, the better.

1 thought on “What Not to Say

  1. Pingback: Why I Walk « autismblues

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