I have this amazing friend who just gets it. She invites us to sensory-safe places, schedules mom dates when our husbands are free to watch the kids, and doesn’t expect anything from me or my son but friendship. She sends me silly memes and lets me talk freely, she asks how we are and leaves it at that. Maybe she knows something everyone else doesn’t know. Maybe someone shared with her how to be sensitive to an extremely sensitive topic. Maybe she just understands how hard this is and knows I need a friend.
I wrote this to help those struggling to find the right words. Maybe you don’t realize you’re being insensitive, maybe I’m too sensitive. Either way I know most parents of children with autism are with me on these. This isn’t meant to discount anyone’s efforts at conversation, it’s more of a perspective of how we really feel when these things are said.
“Are you sure he is autistic?”
Yes, we are sure; and even though you are trying to be helpful, the question actually is quite hurtful. We are sure, just avoid the question and ask about how he is progressing.
“He looked me in the eyes so he must be growing out of it.”
It’s doubtful he will “grow out of it”; but yes, he does have amazing days and is responsive to you at this moment. He grows every day and learns new skills all the time, but he will always have autism. Try instead, “He just looked me in the eye, he is really doing great with therapy. Good job, bud!”
“My child does {insert amazing skill here}” as a response when I share our struggles
Wonderful! I am genuinely excited for you. But when I just told you I fear that my son will always be nonverbal, it’s hurtful for you to follow up with how advanced your child is. Please do share stories about your child with me, but please don’t do it in the same breath I just expressed my fears in.
“He is always so good when I’m around, he isn’t that autistic.”
We don’t allow people to visit on the bad days. You are here during a time of calm, he is getting tons of snacks and his iPad so I am able to have a conversation. Come over at 3am, and let’s see if you say the same thing. Better yet, come by when I’m trying to get him dressed to go to therapy. Come by at those times, I promise you will see real life. Maybe just say what a great job he did and leave it at that.
“Chill out, he is playing and he is fine.”
HA! This is where you completely don’t understand. Yes, he is fine at the moment but anything can happen at any time. I watch him like a hawk to avoid the meltdowns. One small thing out of schedule or the norm can turn into a meltdown that could last for hours. So no, I will not chill out. I will always be on guard because he deserves that.
“Isn’t all that therapy exhausting, is it all really necessary?”
Yes it’s exhausting. Can you imagine your life revolving around therapy? It’s hard to keep track of every appointment and schedule, let alone trying to work around them. All of the therapy is needed and important. I see my child change every day. It’s worth every mile and every tear. Try instead, “I think it’s awesome how much you do for him and I can see it really working.”
“You look tired, you should take care of yourself.”
Wow. Thanks. I would love to take care of myself to the extent you’ve deemed adequate, but that’s not realistic. He comes first, and then I squeeze in time here and there for me. When my husband and I do have time to spend alone, an experienced caregiver for our son is expensive. So we gauge what things are most important. Before you comment on how I look, perhaps you could come over to watch him so I can take that much-needed shower, or offer to come watch him so my husband and I could have a meal out.
“You seem distant.”
I am distant. I feel completely alone most days, even in a room full of people. You don’t understand how hard this is, and it frustrates me that you don’t get it. I use up all my patience with my child so there isn’t much left for others. I’m sorry I’m distant, I miss me too.
“You should get out more, take him more places.”
Oh, I wish I could. You see, I take him places alone all the time. The zoo is safe and quiet during the day, Chuck E. Cheese is a blast when they first open, and Olive Garden is amazing for daytime lunches outside. You don’t see all that I do, you only see small glimpses of our weeks. Home is safe, home is happy and that’s where he likes to be most days. A crowded playground, a busy mall, a birthday party is so incredibly exhausting for us. Why don’t you ask to tag along with us one day for the zoo or lunch? I bet he will hold your hand.
Autism is a sensitive and complex subject. We as parents feel so much guilt every day. I feel guilty about things I have no control over. I worry 24/7, and half the things I worry about haven’t even happened. I feel alone a lot of days, no one understands how hard this is. I also feel so much love for my child I think my heart will burst. We put on our brave faces each day, because our child deserves it. He won’t see the worry, and he won’t see the guilt. Maybe that’s why you don’t see it, maybe that’s why you don’t know what to say.
This is a beautifully written glimpse into how to not only help a friend, but how to hopefully exhibit more compassion for anyone with an Autistic family member. Whether it’s in the supermarket line or wherever else, we can all remember that we never know exactly how someone’s day has been before we see them, and a little bit of compassion can go a long way. I really appreciated reading this, thank you!