Straight Up: Messy Truth

This post will be a little different then those prior to it. While I have spoken on several occasions how autism has affected our family, and written about our many struggles and triumphs, I have not always shared how the misunderstandings of others can often make us feel.

We have had many a success. Many a trial. Learned many a lesson. The overall incidences of autism are increasing, yet understanding and support is often still lacking. And, after 4 and a half years of jumping the hurdles of autism, it still surprises me that our struggles are often dismissed.

You probably don’t even realize you are doing it. I am sure you say these things in order to try to make us feel better. To bring a bit of “normal” into what often isn’t.

But, honestly….you unknowingly dismiss our struggles.

You dismiss them every time you say, “He doesn’t look like he has autism.” Well, that is good…..I guess. Maybe it is because autism doesn’t have a specific “look.” I don’t “look” like I struggle with arthritis, but I do. My daughter doesn’t “look” like she struggles with acid reflux, but she does. You don’t “look” like you have health concerns, but I bet you do. Just as I can’t look at you, or your children and see their struggles. Their feelings. Their hearts. You can’t look at a child and assume he doesn’t have autism. And, just as your child is different from your neighbor’s. Has different abilities. Different interests. Different habits. Every child with autism does, too. There is no “look.” There is no one way a child with autism should be. Because, he isn’t supposed to look like a kid with autism. He is supposed to look like the 6 year old little boy he is.

You dismiss our struggles when you say, “He doesn’t seem to have a problem with me. He always does so well with me.” I am glad he does, because this means we have taught him to respect his teachers and other adults. But when you say this, well…it dismisses our ability as parents. You also fail to recognize that the ability for him to hold it together in your space, in your classroom is the result of many therapy hours. Many trials and errors. Many attempts to control his environment at home. At church. At school. You dismiss the careful plans made to structure every activity, just so he will “always be good” for you.

You dismiss our struggles when you say, “It’s OK. Every kid/my kid does that, too.” Ok, so then you know what that ringing of the hands means right now, right? You know that in a few minutes he will be hitting himself in the face because that anxious ringing of the hands was not prevented, right? You know that he is now laying on the floor, kicking and screaming because the menu said hot dogs, and their must be hot dogs, right? You know what he means when he screams, right? You can tell me if they mean he is hungry. Mad. Sad. Thirsty. Lonely. And, you know they all sound the same, right? Good, because I can’t figure them out. But, I’ll overlook the fact that in your effort to normalize his behavior, you dismissed the fact that it is heartbreaking for us. It’s hard. It’s exhausting. It makes us feel like failures. So, no….he is not like your kid, too.

You dismiss us when you remind us how it “could be so much worse.” Yes, we know. We realize many can’t have kids. Some have lost kids. Some kids are sick. Some struggle a lot more than ours does. But, when you say this you dismiss our compassion. Our ability to be empathetic. Our faith and trust in God. We know we are blessed.

We also know that compassion, empathy, and worse situations aside, our struggles are still real. The tears that pour in the bathroom during a long screaming fit. They are real. The frustration when the words don’t come, and we are left again spending half the afternoon figuring out a number of grunts and groans. That is real. The exhaustion we feel after planning every detail of every event, of every day, and the meltdown occurs anyway. It is real. And, yes….it could be worse. But, this….this is still hard.

We appreciate it. We do. We know you don’t know what to say. That you are only trying to help in whatever way you feel you can. But, please….if you love us. Don’t say these things. Because you dismiss our struggles.

And, in doing so, you dismiss that little boy’s, too.