I am encouraged by the general efforts of our modern society to learn and understand about what it’s like for a child with Autism. We are making strides in the right direction. That’s great! Still, as a parent of three children with Autism, I often find myself surrounded by ignorance. Don’t be offended. That’s a compliment. I could call you a jerk, a donkey’s behind, a moron, or be indifferent and simply sum you up as a complete waste of my time. Trust me, there are parents who think that about you. Forgive them. It’s not always so easy for them and some people become very jaded throughout the journey of parenting a child with Autism. I don’t think those things about you. I appreciate you and your efforts to understand. Because, I know that’s what you are really trying to do.
Your questions, comments, and uninformed suggestions come from good intentions and understandable ignorance. As parents of children with Autism, it’s easy for us to blame others, but we have to accept responsibility for the ignorance as well. We could voice our thoughts. We could do more to educate our friends and family. We could tell you, right up front, the things you might say or do that could make us really mad or hurt. We could communicate better. Forgive us. Sometimes, we are ignorant, too. We might take the easy way out by assuming you should know better. But, why would you? There are so many experiences in life that result in awkward interactions. When someone becomes ill, loses a loved one or a child, is suffering personal crisis, or has a child with a condition that is assumed to lower a child’s “quality of life,” many of us tend to say the wrong thing. I’ve done it. We all do. So, here are seven things you should never tell the parent of a child with Autism. Let’s talk about it!
1. What kind of life____?
Dont. Just, dont! I’m not saying that parents won’t ask themselves the related questions. They will. They do. But, it’s part of the process we go through to come to the only conclusion there is; it’s not up to us to decide. That means, it’s really not up to you, to even mention that. I drink coffee every day. Seriously, I can’t imagine my days without coffee. I have friends who have never touched a cup of coffee in their lives. I’m happy. They’re happy. Our job as parents of children with Autism (and all children) is to focus on helping them be as happy as they can be. Whether a child talks or doesn’t, attends a Special Day Class or a general education class, wears diapers as a teen or is potty trained by the age of two, none of it necessarily speaks to their quality of life.
2. I’m Sorry.
Stop. What are you sorry about? You’re sorry our child has Autism? We’re not. I mean, we learn not to be. Autism is not a death sentence. This is important. Hear this. People with Autism don’t need your pity. They need your support and understanding! They are not burdened. They are challenged. Have you ever succeeded at a very challenging task? Sweet, right?! Every challenge a child with Autism faces and overcomes is a sweet victory! So yes, while they might face more challenges, don’t be surprised if they also acquire more victories.
3. Well, even typical kids____.
Wash your mouth out with soap! No one wants to hear that. It’s kind of insulting. We already know that typical kids have tantrums, too. We already know that typical kids are sometimes set in their ways, shy away from others, lack eye contact, have ritualistic habits. We know. Really, we do! A typical child might exhibit all the behaviors of a child with Autism. Consider though, that there is a reason the typical child doesn’t have a diagnosis of Autism. There is a difference in frequency, intensity, duration, motivation, cause of onset, etc. between the “like-behaviors” of children with Autism and those without. It’s really not the same.
4. She seems fine to me!
This is a risky statement. You might come across parents who are somehow flattered by the remark. You could also be sticking a sharp pointed word-knife right into the heart and soul of a parent who spends endless days and nights fighting for their children’s rights, against an army of people making the same uninformed and insensitive claim, as if to say; “nah, you’re crazy, I don’t see it!” (even though highly educated and trained doctors have repeatedly made the diagnosis.) With those five little words, it’s as if you undermine it all. Take me, for example, sitting here in the middle of the night, with dried tear stains all over my face, digging into the depths of my being, trying to find the strength to subdue my anger and the ability to articulate it in a way that isn’t counter-productive. At this moment, I would not be at all receptive to the comment. It’s not your fault. You probably have the best intentions. This is what you need to understand. Often, our emotions are raw. We don’t see our kids as little Autistic creatures. We look at them as beautiful children, the loves of our lives, who also have Autism. Yet, we are constantly forced to prove that they are not fine, in order to ensure that they have the same chances at an appropriate education as any typical child. We hate that! We love to focus on their strengths, but we don’t ever want to ignore their weaknesses. And, we certainly don’t want you, or him, or her, or the school to ignore them. Just saying.
5. Did you hear about___?
What’s that you say? Oh, the vaccines, that gluten, the sugar, and that newest article. Yea, we heard about it. Or, maybe, we didn’t. Think about what you are really asking (implying) when you say these words. Do you think that if we hurry up and read it, we might cure our children? Do you think that if we read somewhere that immunizations are suspected to cause Autism, that we might spare any future children we might have from getting Autism, too? Do you think that we are out of the loop? What we really need to do is stop reading those headliner articles. You are probably only trying to help or start the conversation. There’s nothing wrong with that, but your approach could use some tweaking! Don’t just tell us about the things that you hear. Ask us what we think. Afterall, we are living it, every day. Sure, we do hope for the cure (as people love to call it). Mostly, we just want those people who want to fix everyone (our children) to look in the mirror, and maybe fix themselves first. Sure, even some parents of a child with Autism are waiting for someone to just fix their poor kid. Well, they’re ignorant, too! Our kids are NOT “broken!”
6. Have you tried or thought about ___?
Yes. No, I’m swear-on-all-things-sacred, serious! Yes. We. Have.
7. Does she still have Autism?
Are you still having bowel movements through your mouth? All I hear is crap! Wait, unless you’re seven. If you’re seven – sorry, I’ve overreacted. My husband was born here, lived in Mexico most of his childhood, then came back here to the United States. He comes from generations of Mexicans. Of course, he’s an “American Citizen.” So, is he still Mexican? Or, was his ethnicity completely erased upon being born in the US?
Think of Autism as one’s roots. We can change where we are, what we do, who we’re with, what we know, and how we act, but not who we are. So, tell me. Does she still have Autism?
By: Alicia Gonzalez
It’s okay to talk about it. Let’s keep the conversation going! Are you surprised by anything on this list? Is there something you might add to it? Share your thoughts in the comments.
UPDATE: Maybe it’s because we’ve all said the wrong thing before, that this article has already received so many shares and views. While there were plenty of readers who have some type of relationship with Autism, I’m sure there were just as many people who were able to identify with the list just because they’ve experienced life. They’ve experienced loss, illness, judgement, and well-meaning people who never fail to make them feel worse. I have to acknowledge some of the feedback. The number one suggested addition to the list was about people who talk about children with Autism, right in front of them, as if they don’t understand what’s being said about them. Many parents spoke out, wishing people would understand that just because their child can’t talk about it, doesn’t mean they don’t understand it; the conversation, whatever it be. The second most shared feedback was actually in form of a question. People wanted to know what someone should say to parents of children with Autism. I spent so much effort sharing my message of the importance of thinking before one speaks, I decided to take a few days to think about this, before responding. Here’s my best attempt at answering that question!