9 Things Never To Say to a Parent of a Child with Autism
We know that people aren't trying to be malicious. Really, we do. But, taking a second to think before we speak might be beneficial.
Dillon was officially diagnosed with autism when he was 6-years-old, but he was educationally diagnosed when he was in preschool. His teachers brought us in for a meeting, and after they described the way he had been acting, I said, "Do you think he has autism?" And his teacher, Ms. Kendra, nodded. I'll never forget it. I'd had my suspicions since he was two, but I thought that I was being too critical, as most mothers are of their children. The first thing I asked, in the midst of tears, was, "Do you think he'll be okay? Will he be able to go to college and have a family and a job and kids someday?" The answer was - yes, with the right support.
He started receiving therapy right away, and we had him medically diagnosed a couple of years later. He's considered "high functioning," meaning that his symptoms are less severe and, sometimes, unnoticeable.
Now, he's in third grade. He's a green belt in karate, and he excels in math and reading. He can memorize an entire movie after a few viewings. He loves to dress up as characters and act out scenes. He makes and edits videos of himself "doing the weather" on our computer, and he loves to swim. He receives educational/occupational support in school, and is not on any medications. We are very lucky, as I know parents of children with autism who are non-verbal and will need lifelong support.
Now, with that being said, we've experienced a lot of reactions from people. I'm not easily offended; I have a pretty brazen and vile sense of humor. But there are certain things you should never ask or say to a parent of a child with autism:
1. "Are you sure that he's autistic?"
Yes. We're sure. Just because he's not mumbling and running in circles and screaming, doesn't mean he's not autistic. Trust me, we've asked the same question to ourselves and his doctors and specialists a hundred times. Even my parents have asked us this. In fact, I'm pretty sure they still don't "accept" that he's on the spectrum. Yes. It's a real thing, and we're sure.
Instead, ask us what things prompted the diagnosis.
2. "Are you sure that he's not just being naughty?"
Think about how well you know your own children. I know my son that well, too. I know when he's being a bucket of sass, and I also know when he's having a legitimate meltdown that we can't control. There's a difference, and I know the difference. Yes, he can be naughty. But he can also have a screaming and crying meltdown because we went into the store through a different door than we did the last time. Sounds frustrating, doesn't it? It is.
Instead, ask us how we deal with meltdowns in public. It's not fun, trust me.
3. "He seems so normal."
What defines "normal?" He's my only child. To me, this is his "normal." This is who he is. I don't know anything different. Every single person in this world is different. Everybody has different quirks, different ways of thinking, different likes and dislikes, different body types, etc. Let's just abolish the word "normal," yes?
Instead, ask how he/she is doing.
4. "Do you know what caused it?"
No. I don't think anybody does. I wish I did, because I would've prevented it. It's a struggle for him every day to grow up in this world and I wish he didn't have to deal with it.
Instead, don't say anything. Seriously, there's no alternative for this one.
5. "Did you do anything bad when you were pregnant with him?"
Yep. I smoked cigarettes, I drank all day, I ate tuna sandwiches and took all kinds of medication. *sarcasm* No, I didn't. I probably didn't get enough sleep and worked too much; I was working three part-time jobs, and he kicked me all night, every night. But sometimes, things just happen, even if you do everything right.
Instead, ask what the parent noticed about their child when they realized he/she might be autistic.
6. "Have you ever had his hearing checked? Seems like he ignores people."
Of course we've had his hearing checked. That's standard practice from birth. He hears you, but he may not respond. He sees you, but he may not look at you. Again, sounds frustrating, doesn't it? It is.
Instead, ask what kind of therapies he/she is receiving. We'd be happy to tell you.
7. "Why does he need melatonin to sleep? Can't you just cut down on his screen time?"
No joke, a guy who works at a health foods store said this to me last week as I was buying a bottle of melatonin. Yes, I agree...screen time is a problem with children today. It needs to be regulated, just like any other activity. He didn't sleep as a baby, when he wasn't exposed to any electronics. I agree that not all children need to take a supplement to sleep. But, when you have a child who cannot turn his/her brain off at night, you do what you can to help them rest.
Instead, ask how we manage to get through our days completely sleep deprived. Empathy is much appreciated.
8. "Maybe he's just a picky eater."
Yes. Traditionally, children with autism can be "picky." But it goes further than that. Some children with autism can't handle certain textures or sounds; it overloads their system. I know one parent whose child (who is very low functioning and non-verbal) will only eat cereal. You think she hasn't tried to get him to eat? She has. I can tell the difference from when he's being "picky" and when he just can't handle the sensory overload.
Instead, ask what kind of foods he/she enjoys the most, and which foods bother them, and how we handle it.
9. Don't say anything that includes the words Jenny, McCarthy, or vaccines.
In conclusion, THANK YOU for your concern. We truly do appreciate it. Just remember that we deal with it every single day. And most days, we feel alone. And every day, we blame ourselves. We wonder what we could've done differently, we wonder what it would be like to have a child who is not on the spectrum. Some days we want to talk about it, some days we want to curl up on the couch and cry about it. But we hope that you will continue to reach out.