What Not to Say...

I'm sure you've all seen the lists. There are tons out there. I used to skip over them, like many of you might still do. Now that I have my sweet Emmie, I thought I'd write my own list and a little about why each "not to" is significant to me. Most of them will appear on others' lists as well because it's nothing special or new, but I thought if they came from someone you knew you might be more open to reading it. Here it is, my list of what not to say to parents of autistic children!

Preface: Before you read this just know, these comments don't make me really mad or upset. I just cringe a little when I hear them. They are things I may have said at one point in time, but Emmie's diagnosis brings new meaning to everything in life. If you've said this to me, it's okay. You're not a bad person. Actually, you may have been trying to be supportive or learn more about autism and that's awesome!

What NOT to Say to a Parent of a Child With Autism

1. Any variation of the following:

• But she's so pretty.

• At least she doesn't look autistic.

• You'd never know, she looks so normal.

I've heard each of these from different people after telling them Emmie is autistic. The reason it bothers parents of children with autism is because autism does not have physical characteristics. Now, there can be symptoms such as stimming (ex: hand flapping) that are seen with some autistic children, but it's still not "what they look like." My baby is not pretty for an autistic child. She is just pretty. Also, just because she is pretty and appears to be neurotypical does not mean she doesn't really have autism. Sometimes when people say things like this to me, it makes me feel like they are discounting what we struggle with or experience based on how she looks. It feels dismissive. We can't associate a "normal appearance" with a neurotypical brain.

What you can say: Just simply say, "Your sweet girl/boy is so beautiful. I know you are proud!"

2. What do you think caused it? Did you...

Ummm. I got nothing here. Literally. Nothing caused it. At least not that we know a whole lot about. If they knew what caused it then we would all be preventing it. I think it's important to note that the first part of this is not too bad, but what follows is always hard. This one stings because it feels like there needs to be someone to blame. Trust me, we have already blamed ourselves. No matter what the doctors or specialists say, you always wonder if there's something you could have done to avoid your child having to struggle. This is also tricky because some parents choose to see autism as a gift. If they want to feel that way, I support them 100%. However, I do not feel like Emmie's autism is a gift to her. And that's okay too. I hate that she has to struggle and work so hard to overcome what comes naturally for most of us. I've already wondered if its genetic, if I ate healthy enough, if I let her watch too much TV too early, and so on. This question doesn't help any of that.

What you can say: "I don't know a lot about autism. Can you tell me more about it and why some children are born with it?"

If may seem like you are saying the same thing, but the blame is missing. That's what's important.

3. Autism isn't real.

I had to take a deep breath after typing that one. I've actually had people in the medical profession say this to me! I've had people tell me that it's just another thing to diagnose people with to make money off of parents for appointments and therapies. I've been told it's a diagnosis used to push medication on children. I could go on.

Autism is real. I think most of you reading would agree. There is no "autism medication." They aren't sitting around pumping autistic three, four and five year old's with medication! Medication has never been mentioned at any single appointment Emmie's ever had.

There is significant research about autism and why there appears to be an increase in diagnoses as the years go by. I live in the reality of autism. I've experienced it in the classroom with my students as a special education teacher and now as a mother. I'm not sure there's much more I want to say on this. I may have lied above...this one make me angry.

What you can say: "I know there is so much I don't get to see or experience concerning autism. What's it like for you guys? How are y'all doing? I see you. I love you."

4. Just give her time. She will (insert milestone) whenever she's ready!

No sir. I will not just give her time. Time is everything as far as autism is concerned. I will follow research based methods that are proven to help her live her best life. I won't ignore best practices that are proven effective because of your personal (non-professional) opinion. Rebecca Landa, Ph.D., director of Kennedy Krieger Institute's Center for Autism and Related Disorders in Baltimore, MD explains that "there are sensitive periods in brain development where the brain is most ready and has the greatest capacity to alter the way it designs itself based on the kinds of experiences the child is exposed to." Early childhood is one of these times. For children on the spectrum, receiving interventions, such as ABA therapy, during the height of their neuroplasticity is crucial. I knew I wasn't willing to "wait it out" with Emmie. We could either enroll her in therapies that are proven effective or hope for the best. We wanted more then just hope for Emmie. Would she have talked if we waited to see if it happened naturally? Maybe, but we didn't want to wait to find out. And that's our choice.

Some parents don't think ABA therapy is a good option for their autistic child. That's their choice. Don't give them an unsolicited opinion either way! If you've haven't noticed, they probably never tell you what to do with your child. They are too busy worrying about raising their own.

What you can say: "You are doing everything possible to be the best parent you can be for (child's name). He/She is so lucky to have you."

5. Oh, my kid does that too and he/she isn't autistic, are you sure she really is?

There's a saying anyone familiar with autism has heard: "If you've met one child with autism, then you've met one child with autism." Every autistic child doesn't display every characteristic associated with ASD. We all have characteristics that make up who we are as a person. Your neurotypical child can hate loud music the same as a child with autism can. They can also prefer to wear shorts because they don't like the way pants feel on their legs (sensory issue). They can have temper tantrums that seem similar to Emmie's meltdowns. There are several categories of criteria a person must meet to be diagnosed with ASD. Just because our children have something in common doesn't mean my child is not autistic. And if your child is doing everything the same as my child, I hate to say it...you might want to consider an evaluation.

What you can say: " Oh, my girl/boy does that too. Doesn't it drive you nuts? It can be so frustrating." It's okay if we connect as just two parents.

Here are a few more that are cringy, but I'll just list them quickly:

• But she's a girl. Girls don't really have autism like boys do.

• She just needs more discipline and structure.

• She's just spoiled.

• She'll eat if she gets hungry enough.

• You're letting her behavior stress you out too much, just relax.

• I heard if you do (insert treatment or diet or supplement) it will make her autism go away.

• My friend's kid was autistic but he outgrew it.

• You can do what they are doing at therapy on your own.

• ABA therapy is child abuse and your child will grow up to resent you for it.

• Just work with her more on stuff.

• You made her that way by...

I'd also like to take a second to share some things that are good to hear and experience with others.

• Don't avoid conversations about autism or something they are clearly struggling with. Silence can be isolating to parents of special needs children. You're probably thinking, "Well, you just called out others for saying something 'wrong." I don't want to be like them." That's not my intent. I learned a while ago that as Christians we are trained to say little corky things that really don't help in certain situations. Like telling someone, "God doesn't give you more than you can handle." That can be hurtful instead of encouraging. Try telling that to a person going through cancer or the death of a loved one. It may be true, but you saying it right then and there is not helping. Sometimes stuff just simply sucks and its better to acknowledge that. Allow people to feel what they are feeling and offer your love and support. So, these things above are similar to that...in a way. I just want to offer a different perspective. If you are wondering if it's rude or insensitive to ask something, just ask me. I'll tell you what I think. If you are honestly just wanting to know to avoid being hurtful, then I'm happy to help.

• Be inclusive. You're friend with a special needs child might be lonely. Don't forget about us. It means the world just to be invited. Even if they keep saying no, invite them places. Understand if they say no, it's because they feel like they can't for some reason. Of course, they might just be busy. But if not, it's okay to ask what is making them not want to go. You might be able to offer a solution to a problem that they didn't think about. Just don't be too pushy. Sometimes we just can't...mentally, emotionally or physically.

• One of the most meaningful things to me is when someone watches Emmie so my husband and I can go out to eat or spend time together. It's hard to feel like just anyone can watch her, and often times I ask our parents and they are always helping out so much already. It feels like we are being a burden at times. If you have a friend in your life with a special needs child, ask them if they'd be comfortable with you watching them so they can have time with their partner or for themselves. It would mean the world to them.

• Share positive things you notice about their child. One of the most encouraging things I've experienced yet was a friend texting to tell me about seeing Emmie on the playground one day. Another child had fallen and Emmie bent down and patted the little boy on the back and asked him if he was okay. My friend thought it was sweet and wanted to tell me how loving Emmie was. It meant a great deal to me. I don't always get to see that side of her. Empathy and compassion can be hard for people on the spectrum. Anything positive you can provide is probably going to be very uplifting for them.

• Listen. Ask genuine questions about everything and listen to responses with compassion and as much understanding as you can find.

After Emmie's diagnosis, the way I viewed things changed and evolved. I realized I hadn't been paying close enough attention to my words or actions at all. The couple with the crying toddler in the middle of a crowded restaurant could be fighting a battle I know all too well. I'm not going to be annoyed with them and roll my eyes at them as I might have in the past. I'm going to stop and say a prayer of strength and peace for them, even if their child is just a neurotypical child having a rough day. When a child won't look at me in the eyes when I'm taking to them, I won't assume it's because they are being disrespectful and haven't been taught manners. Our actions and words matter. It took me having Emmie to realize how harsh mine were at times. I've still got a long way to go, but my baby is showing me a life of love and compassion for others. I'm so thankful to her for that!