The majority of people know someone who has a child on the autism spectrum. A lot of them were in those people’s lives when they received the diagnosis. When we are put in a new and uncomfortable situation, weird things start to happen. I like to call it “diarrhea of the mouth”… Stuff just starts pouring out because the only thing worse than saying the wrong thing is the awkward silence that is created by saying NOTHING! Most autism parents grow to understand that people tend to say incredibly inappropriate things with very good intentions. They don’t have the slightest idea that they’re saying all the wrong things. So here are 10 things you should never say to an autism parent:
1. “I’m sorry.”
Saying you are sorry to the parent of a child recently diagnosed with autism is like a slap in the face. It’s like you’re telling us that you pity the lives that we and our autistic child will have. We beg for your empathy and your willingness to understand, but do NOT pity us. We are the strongest and luckiest people on the planet. So do not feel sorry for us.
2. “Do you think your kid was misdiagnosed?”
Are you freaking kidding me right now? You ask me this as if I WANT my kid to have autism. Do you not think I endlessly searched for the BEST developmental pediatrician in the southeast? Because I did. I spent a small fortune to have my child evaluated by the most qualified person in the profession. So don’t read a 5 paragraph article about autism, suddenly think you’re an expert, and then have the audacity to question the diagnosis made by a physician with 40 years of experience making these diagnoses.
3. “But your child doesn’t even look autistic!”
I wrote an entire post about this particular comment. Click here to read it. To sum it up, autism doesn’t have a particular “look.” It comes in every shape, size, age, ethnicity, gender, and socioeconomic status. I’m just going to leave it at that.
4. “My second cousin’s boyfriend’s sister is autistic and she just graduated college!”
That’s great for her. Truly, it is. But that doesn’t make me feel any better about my kid’s future. Her diagnosis does not define her, so don’t act like it will be a miracle if she goes to college or a tragedy if she doesn’t. You wouldn’t say to the mother of a child with red hair that you know a guy with red hair who just graduated from Harvard, would you? No you wouldn’t. Because that would be stupid. Just like it is stupid for people to clump every person on the spectrum into one category, ignoring the fact that these people are individuals with different strengths and weaknesses, just like every other person.
5. “Are you going to have more kids?”
It is one thing to ask this question because you’re truly curious about how many kids we want. It is an entirely different thing to ask because you think us having an autistic child has changed our mind about having more kids. We can tell when someone asks this question with the negative undertones.
6. “Do you think she will grow out of it?”
Umm. No. No I don’t. She will learn to manage it better as she gets older, but it will always be a part of her. Autism is a condition present at birth. It doesn’t spontaneously develop or spontaneously go away.
7. “She is going to be just fine.”
I hope you’re right. I really do. But that isn’t your call to make. I never want to set limits on what my child can achieve but I am also realistic. She may not mainstream in kindergarten. She may not be able to get a job in high school. She may not go to college. I hope and pray that she DOES do all of these things, but don’t take the initiative of raising the bar so high that I feel like a failure if she DOESN’T do these things.
8. “She is very high functioning.”
You have been around my kid for a few hours and you are suddenly qualified to make that assumption? Do NOT minimize the struggles that we face every single day. Don’t act like because my kid is happy, that means she doesn’t have complete meltdowns because her French fries are curly and not straight. Every day is a challenge. Every day brings new hurdles that we are forced to jump over, usually scraping our knees in the process. My family is strong, optimistic, and blessed. We are also broken, bruised, and stressed. We face battles that you can’t begin to fathom, so please don’t insult us by saying, “she is very high functioning.”
9. “I know how you feel.”
No you don’t. Unless you have a child with autism, you actually don’t have the slightest clue how I feel. Just because your kid was a late talker, that is not the same thing. Just because you have been around someone with autism, that isn’t even close to the same thing. I am fully aware that we are all faced with struggles. I am not trying to minimize the struggles of others. But it is insulting to have someone compare the fact that their toddler occasionally misbehaves at a restaurant to the fact that my kid won’t touch certain foods, won’t let people touch her hands, is terrified of strange noises, and is still not talking at 22 months old. I am not bitter about these struggles. But they do make life pretty difficult. So please don’t act like you understand what I’m going through.
10. “I’m here if you need anything.”
Let me clarify… If you are going to make this generous and selfless offer, please make sure you mean it. Because I can assure you, there will be multiple times that an autism parent will need something… A break from the kids, a shoulder to cry on, a friend to drink wine with and vent to, someone to help get the house in order before the in-laws visit. Parents of kids with special needs quickly realize that they can’t do this alone. They need their tribe. So if you offer to be a part of that tribe, don’t let us down when we need you. If you can’t make that kind of commitment, that’s totally fine. It doesn’t hurt our feelings if someone doesn’t offer. What hurts beyond repair is for someone to offer and then not be there.
I hope this lists provides some insight from a different perspective if you haven’t been on this side on an autism diagnosis. Please don’t read this list and then be terrified of saying the wrong thing to someone. That isn’t the purpose of this post at all. Just try to be more aware of how your well-meaning words can be misconstrued. If you can’t find the right words to say, it’s ok to say nothing… Just be present for the person in your life who really needs you to just be there.