Posted in Advocacy, Parenting

Megaphones, Not Warriors: The “Autism Parents” We REALLY Need

 

[Image: The monument of Motherland Calls in Mamayev Kurgan memorial complex in Volgograd (former Stalingrad), Russia.; the statue is on a hill of green grass; it’s a woman with a flowing toga-style dress reaching one arm back. The other arm is raised to the sky, with a sword. The question is, is she asking her followers what they want to do or telling them?]
This piece is from one I published last fall or winter.  The words I wrote then are even more relevant to me as I work to create a school for people like me (and Disabled people not like me).

 

When you talk about creating a school that’s inclusive, you get nay-sayers talking about people pulling knives on kids.  Yes, I guess that’s a risk, but I see us more as a sanctuary for people who have been victimized by other educational alternatives.  You know the type (many of you ARE the type!)…someone made you sit in a chair at a desk and you hurt so much you couldn’t focus on your work.  You’d rather stand or sit or lie down or whatever, but that wasn’t allowed.  Or maybe you have to move, just a little bit, and you just need someone to help you find a movement that doesn’t distract others while it helps you to focus.  Or maybe you learn at a different pace, faster and/or slower than the norm.

But the worst group are the ones who insist kids need to live in the real world sooner, than later.  They need more kids around or they’ll get worse.

Without revealing too much, I lost a young teen this way quite recently.  The so-called experts said he needed more kids.  The so-called experts aren’t Autistic, nor do they have ADHD.  I do.  I know him better than they ever can.  He needs more kids around the way a fish needs to take a walk on land.  Maybe he will in the future, sure.  But he needs for now to love himself so much that he can self-advocate and thereby choose his society and advocate for what he needs for himself when he is ready.  Anyway, I don’t blame his parents.  They’re scared.  Experts scare people.

I will note that he, himself, seemed to want to stay with us, which was support for my opinion.  He was worried about leaving my school and what would I say, which was sweet.  Had he himself said he wanted to try this, I’d tell him hey, let us know if you need anything!  We’ll be here praying for you so you can have a great school year!  But he didn’t, and the mom didn’t, either.  She was afraid, not excited.  She was afraid.

That’s part of why I wrote this piece, too.  Warrior Moms have a source and so often they’re bad experts, and the real underlying motive of an Autism Mom isn’t narcissism (though it often looks like that for many layers…), it’s fear.  These experts who make money off of our suffering are the real problem.   Here’s a repeat of that post where I explored more effective parent advocacy.

 

It’s popular for parents of Disabled children to proudly call themselves “Warriors.”  Common usage in the Autism community is “Autism Mom” or “Autism Dad” or “Autism Warrior Mom” (etc.).  And I get it; I’m the parent of a Neurodivergent child, too, but in the Disability community, we tend to frown on this usage.  Let me unpack a little bit of the problem with this perspective and provide some tips for how you can adjust your thinking to be the best advocate you can be.

 

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