Maybe you have met me, or someone like me. Maybe our kids struck up a game on the playground or more likely started fighting over something. During our typical get to know you conversation, we talk about where we live, our significant others, employment, siblings- you know, basic small talk.
However, seemingly out of left field, I throw you a curve ball and blurt out that my son is on the autism spectrum.
You are left wondering, why did she blurt out this information? For me, it is two-fold. First, autism takes up so much space in my life I have yet to create a witty way of saying it without saying it so when in doubt, I go with the truth. Take, for example, what my son does after school. He works with a therapist at home. When I’m talking to a new mom friend, I don’t want to lie and say, oh he has a nanny or an au pair, because this isn’t the case. He has in-home therapy, so I go with honesty which then leads me into saying that he is on the autism spectrum. Second, I don’t think autism is anything to hide, to be ashamed of, or not to be open about. Yes, my son has a disability. Being on the autism spectrum makes him different but equal to his developing peers. It is part of him and who he is as a person, and I firmly believe that knowing his “label” allows for a better understanding of who he is as a person beyond just a child on the autism spectrum.
Often times after I throw my curveball into the conversation, the response I get in return is complete silence.
After the silence, sometimes a polite nod, however most often what I see next is a look of shock on the person’s face. A look of, oh crap, she just said her kid has autism and I have no idea what I am supposed to say next.
I get it. I have been in more than a couple of conversations where I didn’t know what to say and I didn’t want to hurt the other person’s feelings, or say anything taboo, or look like a complete jerk, so I just didn’t say anything at all.
However, this silence doesn’t just happen with strangers that I meet on the playground, it also happens with my friends and family. It seems like people just don’t want to say the wrong thing, so they just don’t say anything at all. Once again, I get it. You see an article or Facebook post regarding all the “rules” around talking about autism. Use “people first” language (for example, “a child with autism” is the respectful way to speak of my son not “an autistic child”), don’t mention Rain Man, or vaccines. You get confused about what you are supposed to say or not to say, so you follow your mom’s advice and you don’t say anything at all.
From my perspective, though, when most people you know never ask about a significant part of your life, it starts to feel lonely.
If you know someone who has a child on the autism spectrum, or you have just met an oversharing momma who wears heart on her sleeve like me, and you are wondering what to say, here are some perfect statements or questions for the conversation.
I don’t know that much about autism. I would love to learn more, can you tell me what is like for your family?
Why is this so awesome? First, you are letting me know that you heard and acknowledged that my son is on the autism spectrum. Second, you aren’t making any assumptions that because my son is on the spectrum he has super mathematical skills or is a music savant. You are simply trying to get to know him and us better, and who doesn’t love that!
Say an honest trait or skill that you have noticed.
Who doesn’t love a compliment? Whatever you notice that is positive, go ahead and say it. “Wow, he is really great at climbing” or, “Our two kids play so nicely together.”
If you know the person well, you can always say what you have seen the child improve on. For us who are in the trenches, oftentimes it is hard to see the progress that has been made, and it is nice to know that people are seeing gains.
Have a success story? By all means, tell me all about it.
Your best friend’s daughter who is on the autism spectrum is the lead in the school play, or your nephew is living independently, or you just visited a coffee shop which employees people with disabilities? I love to hear about other people on the autism spectrum and their successes.
Have you heard of this resource?
Tell me about it. Vermont is full of amazing resources for kids on the autism spectrum and while we know about most of them, we definitely don’t know them all.
How are things going? Yup, it can be as simple as that.
This is probably my favorite. It is short and sweet and leaves the conversation open. It also allows me to talk about autism or something else that is going on in my life.
You are doing a great job.
I think this one goes for all parents. It is just good to hear from others that you are rocking raising these tiny humans.
And my last piece of advice is to say anything. Really. I would much rather hear someone stumble through an awkward response than say nothing at all.
Saying nothing at all makes me feel like my child seem invisible. So, if you are ever wondering if you should or shouldn’t say something, always go with saying something!
I hope this post gave you a better insight on how to talk to a someone- be it a stranger, a close friend, or a family member about their child’s disability. If you would like to learn more about how to say something to someone when life doesn’t go as planned, I highly suggest the following books:
There Is No Good Card For This: What To Say and Do When Life is Scary, Awful, and Unfair to People you Love by Kelsey Crowe Ph.D. and Emily McDowell
Option B: Facing Adversity, Building Resilience, and Finding Joy by Sheryl Sandberg and Adam Gran
The Art of Comforting: What to Say and Do for People in Distress by Deckle Edge
UnSelfie: Why Empathetic Kids Succeed in Our All-About-Me World by Michele Borba Dr.
Words to the Rescue: The sentiment guide for the tongue-tied. 1000 thoughtful things to write on the card when you don’t have a clue by Steve Fadie