But I Don’t Know What to SAY!

Kim Dull


I realize that 99.999% of the people I talk to regarding my son’s special needs and diagnoses have good intentions–they just have no clue what to say or how to react. They’re trying to help, but unfortunately some of the most common responses are the most irksome.

I want to acknowledge that quite often I am just as clueless about how to respond when someone shares news, like a new diagnosis, even though we’ve been through it ourselves. Everyone is different and reacts differently; that’s what makes it so hard. What works for ME may not work for the next person. And this is not intended to make you feel like you need to walk on eggshells when you get this news. Quite the opposite: it’s intended to make you feel comfortable in NOT knowing what to say.

So here’s a quick how-to guide for navigating the tricky waters of the Autism (or any Special Needs) Conversation.

DON’T SAY “Everything happens for a reason.”

Really? And what’s the reason behind my son’s significant developmental delays and sensory seeking behaviors? To teach us the patience of saints?

DO SAY something along the lines of  “Wow. How are you doing?”

Because I’m actually doing just fine, thanks, but asking means you care. Telling me about our situation is frustrating. Asking me about our situation gives me a chance to vent and discuss in a way that I find

to be cathartic.

DON’T SAY “That’s just what boys do” or “My brother/son/nephew/friend down the street did that as a kid.”

While I accept the fact that a vast majority of boys enjoy throwing themselves into furniture, jumping off really high things and generally causing havoc wherever they go, I don’t accept that “all boys” do so constantly and with no regard for personal safety or the safety of the people around them. Nor do I accept that it’s “normal” to rub one’s face across any surface, constantly rub one’s hands on the legs, arms and head of loved ones, or jump on the bellies of family members who are minding their own business laying on the sofa watching TV and knocking the wind out of said family members, just because it’s enjoyable to hear their grunts. He thinks it’s hilarious. My bruised internal organs? Not so much. We’ve learned to be on high alert anytime Monkey Man is on the prowl.

DO regale me with an example of your own child/brother/nephew/friend down the street doing a similar thing but also acknowledge that it IS different than what I’m talking about.

I love hearing stories about other people’s kids. I especially love funny stories about them doing the crazy things that kids occasionally do. I think for me the simple change of “One time my son…..” from “Oh, my son does that!” shows that you understand the difference between the occasional act of lunacy and the day-to-day crazy that happens around here.

DON’T SAY “Einstein didn’t talk until he was 3.

OHMYGOD. If I hear this little factoid one more time I’ll scream. I’m very well aware that Einstein was a late-talker. But I doubt that he continued to be unable to answer simple questions other than those

with yes or no answers. My son is smart. He can use my computer and operate the DVD player. That doesn’t mean that he’s “just like Einstein.”

DO feel free to tell me about your own concerns about your child’s development and how it was resolved.

So many parents worry about their kids being on track. Isn’t that the huge focus of parenting nowadays? Is my kid crawling? Is he walking? When was his first word? Is he reaching his milestones on time?

I don’t know of a single parent who hasn’t had at least one concern about their child, and it’s nice to commiserate with others about those concerns. But it’s also nice to hear when a kid catches up. Your son didn’t walk until he was 20 months? I can definitely relate to that! But I can also relate to the fact that they did finally walk and you’d never know it now by the way they run around with their friends

and siblings.

I think the key for me here is that there’s a difference between a blanket statement about Einstein – that, frankly, is moving into urban legend territory at this point (although we know he was a late talker) – and a personal story about one’s own child.

I understand that most people’s reactions come from a place of love and wanting to comfort. But you know what?

It’s okay not to know what to say.

Hell, it’s fine by me to say, “Wow. I really don’t know what to say.”

It may sound strange, but I am still in a place where I waffle back and forth between being okay with the diagnosis, and doubting the diagnosis, and some of these comments I’ve heard, unintentionally feed into that doubt. Later, when the reality of the situation hits again, it strikes that much harder.

So I hope this helps, lets people know that, once again, it really is okay to not know what to say.