Just as every child experiences autism in a different way, parents of children with autism have different sensitivities to the way other people talk about and treat them and their children. What one parent might find helpful, another may see as offensive, and over stepping a boundary. Each parent’s ability to extend grace to some of the offensive things thrown their way by well-intentioned and concerned friends may depend on how recent the diagnosis was, how early it was detected, or where on the spectrum their child is. Let’s be honest here, our reactions to certain questions and ignorance probably change day to day, but here are a few things we can all agree need to stop. Here’s what not to say; and what to say instead.
9. He can’t have autism because…
As parents of a child with autism, trust us when we say that we’ve already gone down that road. We’ve brought up all the points you are about to make, and yet… Our child has autism. It was hard to accept, and sometimes it’s still a daily struggle. So even though you think you are offering hope or a second opinion, you’re actually more of a 37th opinion, and you’re making it that much harder for us to come to terms with the diagnosis. Instead, ask us about autism! We have a ton of knowledge!
Instead, say: I’m new to autism, can you tell me more about it?
8. OH! Is your kid one of those savants?
Actually, less than 10% of those diagnosed with autism have savant qualities. Without meaning to, this question often makes us feel like autism is only acceptable if he or she were extraordinarily gifted. In fact, our kids are talented, unique individuals! Go ahead, ask how they are doing! We love to brag on them as much as any other parent!
Instead, say: How is your child doing?
7. But your child looks so normal!
I understand that this common misconception probably comes from mistaking autism for another disability, such as Down Syndrome, and in fact you probably mean it as a compliment. What it comes across as, is, “Wow, Johnny sure doesn’t look like a freak!” (The underlying assumption being that Johnny is indeed, a freak, regardless of how he looks). Instead of committing this faux pas, you can just pick out something that you think Johnny does well, or that you like his bright blue eyes, or really, anything. Just like you would those “normal” kids.
Instead, say: Literally any compliment. Just like you would any other child.
6. I know what you’re going through, my cousin’s neighbor has a child with autism.
Just because you know someone who knows someone who once mentioned babysitting a kid with autism, doesn’t mean that you understand the struggles we go through as the caretakers of these kids. Again, I’m sure you mean well, and you are trying to relate to me, or get me to talk more about my child, and I appreciate the effort… But it’s much different to hear about a child with autism, than to actually live with it every day. It’s ok if you can’t relate. Just knowing that you care and are interested is such a great blessing!
Instead, say: I can’t imagine what you’re going through. How can I help?
5. Have you tried… this new diet/exercise program/plain ol’ discipline?
Short answer: Yes. As concerned and loving parents who just want the best for our children, trust us when we say that we are subscribed to every autism research news source available, and often we go into research overload whenever a decision on treatment needs to be made. Chances are, if you are asking about that new, untested treatment that was featured on the news last week, we have already googled, called, asked the therapist, and debunked it, like 3 months ago. That’s not to say, don’t ever bring up new research you find, but word your question in a way that invites a conversation, instead of challenging us to defend the choices of treatment we’ve made.
Instead, say: I saw this new study on autism, I’d love to get your perspective on it, if you want to talk about it.
4. You should really make time for yourself, go schedule a massage or something!
Sometimes, “me time” just isn’t an option. Instead of making us feel guilty for getting too stressed out and not taking care of ourselves, offer to help out! Have you noticed that I haven’t slept in 4 days, and the bags under my eyes have become a permanent fixture on my face? I’d be thrilled to go get a mani/pedi, but the reality is that my family needs me. So if you want to step in for a few hours, be my guest!
Instead, say: If you feel like you need some time alone, I’d love to help out in any way.
3. How’s your marriage going? I hear the divorce rate among parents of kids with autism is like 80%.
Similar to #4, this question is just downright unhelpful, not to mention extremely personal. If you’re my BFF, then fine, go ahead and ask. Chances are you already know anyway. But if we’re not super close, why would you even ask this in the first place? Instead of drawing attention to the number of things I need to pay attention to other than my child, a better approach is to ask how you can help. (Are you sensing a theme yet?!) Offer to babysit for an evening, or bring us a dinner so that’s one less thing to worry about.
Instead, say: Can I babysit so you and your spouse can have a date night?
2. You’re my hero! God won’t give you more than you can handle! Special kids for special parents!
Here’s the thing – I’m not any different or better than any other parent. We all love our children, and every one of us does our best to give them every opportunity, and overcome every obstacle to give our kids the best of what life has to offer. Trite phrases and overused clichés are frankly not very helpful. Some days it feels way more than what we can handle. Some days we don’t feel like very good parents. Some days we just need to be real, and share the struggle. The best thing you can do is listen.
Instead, say: I’m here if you want to talk. I want to help out in any way I can.
It’s way more offensive to ignore or dismiss my child than to sound ignorant by asking questions. There is nothing you can say if you are well-meaning that could ever be worse than saying nothing at all. The last thing I want this list to do is silence those around us. Autism is already such an isolating disability, both for those who have it, and those who are around it. We all have to start somewhere…