Why I don’t like “you don’t understand Autism unless you have a child with Autism” posts.


We’ve all seen them. The ever-so popular “you won’t understand….unless you have….” posts. I don’t like them. I would go so far as to say that I hate them, but I vowed to not give that much energy towards persons and things that really don’t need that much of my energy. “Hate” expends too much energy.

But I really, strongly dislike those posts. I couldn’t quite figure out why I didn’t care for them, until now. It’s not so much that I find them somewhat boring and redundant, which they are, it’s that they don’t really offer any solutions. They’re elaborate, wordy rants…and nothing is inherently wrong with that. We all gotta get it out. I guess it’s just that I’m past all that. I’ve entered this phase of this journey where I prioritize solutions over many things.

These posts and memes don’t offer solutions. And I don’t think they do anything to improve relations between those with special needs children and society as a whole. If you’re just venting to vent, then have at it, but the majority of those who post these memes or write these posts do so under the impression that it will somehow make the subject of their ire just “get it.” And it doesn’t. It won’t.

Why would it?

These posts basically say, “you don’t get it because you don’t have a child with autism.” Okaaaaay…. Now what? What do you want them to get? What is it that you want them to understand? That it’s hard? Yes, it’s hard. What do you want someone who doesn’t understand to gain from knowing that it’s hard for you as a parent of a child with Autism? How do you get them to not only understand the difficulty you face but also care that you face them?

I will tell you it ain’t by telling them they don’t understand. It’s like folks tune you out after being told they don’t understand shit. I don’t know if they even mean to or if it’s just some flaw we humans have. We don’t like to be told we are wrong about something. “YOU DON’T KNOW WHAT IT’S LIKE BECAUSE YOU DON’T HAVE A CHILD WITH AUTISM!” And that may very well be true, but you aren’t inspiring change and understanding here, you’re inciting defensiveness.

As a minority member of society, in more ways than one, I know that progress cannot be made without contributions from the majority. They won’t ever acknowledge our plight if we continue to engage in methods that shutdown discourse. I’m not saying some folks don’t need to be hit with a few curse words and a few middle fingers (I’ve matured in many ways, but I’ll cuss you out quick if need be).

I am saying that simply claiming they don’t understand isn’t enough. How do you make them understand the challenges you face as an Autism family? How do you allow them to see the challenges your child with Autism faces? Change the delivery.

I don’t spend my time anymore telling people they don’t get to have opinions or make comments because they do not have a child with Autism. They most certainly are entitled to their own thoughts and opinions, even if I don’t agree with them. I’d rather spend my time showing others how we live as an Autism family. Being vulnerable in our experiences. Inviting them into our world.

“You don’t understand what it’s like to worry constantly about the next meltdown.” No, they don’t. I don’t tell them that. I share with them all the preparation that goes into just one outing with my boys. I show them how late I stay up trying to find that special spoon my kid loves, or how much gas I burned driving all over town for Ore-ida crinkle cut fries. I saturate their lives with ours. I draw out their questions and I invite them to the table.

It’s more work, but it’s necessary work. We need non-special needs individuals as allies and friends. I like to think that it’s not that they don’t want to learn and understand, we often cut them off before understanding can ever take place. It’s difficult for them to place themselves in our shoes if we keep telling them they won’t fit.



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