Seriously, just don’t…we beg you!
Written by: Karen Kossow
About 1 in 44 American kids are currently diagnosed with autism.
While autism awareness may have increased, acceptance hasn’t necessarily kept pace.
Chances are you love, work with, or at least know someone parenting an autistic kid…or two, or three - it can be genetic after all.
As someone raising two wildly wonderful autistic children, here are the four things I frequently hear that hurt the most, and ideas to help you re-frame your perspective.
“I’m sorry! That’s so awful for you.”
I know this comes from a place of concern, but we don’t need misplaced sympathy adding to our (potential) shame spiral…it’s hard to not blame yourself for the challenges your child goes through.
Autism isn't something anyone has to apologize for because no one caused it.
While it’s helpful to acknowledge our parenting path is more complicated, it isn’t a situation that requires remorse.
Support is cool, pity is not.
“I don’t know how you do it!”
Most days, neither do I!
Many parents I know who’re raising autistic kiddos are tired, overwhelmed, overscheduled, and often, hanging on by a thread. We’re doing “all the things” because we have no choice…
If you “couldn't even imagine” what we go through, try taking something off our plate!
Think of ways you can help: pick up our groceries, stop by with dinner, walk our dogs so they’re calmer and less likely to bark when our child starts having a meltdown, take the other kiddos out for a break…
There are infinite ways you could help that aren’t a platitude designed to reassure yourself you’ll never have to experience life the way we do.
“They just need more discipline…back in MY day we didn’t have all this autism and stuff!”
You will never discipline the autism out of someone. Trying to often leads to PTSD and severe emotional issues on top of the innate challenges they already face.
The world had autistic and disabled folks “back in the day,” but they were locked away in institutions so no one had to see them. While it may seem like there’s been an “explosion” of autism, much of it can be traced back to improved diagnostic processes and increased awareness.
What all autistics (and their families!) need is understanding, compassion, and support.
If you aren’t capable of delivering it, stop and ask yourself why…
Then consider what type of discipline you need in order to develop some empathy.
Nothing
I can’t tell you how many people simply walked away from us over the years. It’s in the dozens, at least.
Decades-long friendships: gone.
Family members: out of our lives. Seemingly forever.
I still haven’t figured this one out, but I do know ghosting someone who needs your support and friendship isn’t the answer.
My kids and I are the same people we were before they got diagnosed…you liked us then, so what changed?
Meltdowns are no fun to witness, and I know there are genuine safety concerns sometimes. Perhaps, you just don’t know what to say…
Start by asking how we’re doing! Stay with us. Give us the chance to get our feet under ourselves.
We may not be able to relate to everything you experience with your typically developing kids, and we may sometimes struggle to make (or keep!) plans, but we still want to be a part of your life.
Parenting an autistic child is a longer, 'twistier,' much wilder parenting adventure than we imagined we’d be on…
Do what you can to make sure it isn’t also lonelier.
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All great !
I’ll also add “but they are doing fine and having fun - just stay for 1 more hour - Come On !!” right in front of the kids, moments before the meltdown …. :(