Posted in Autistic Identity

The Rules as Written By Hallmark, the Media, and Children’s and YA Media

This is another archived post I’m bringing back.  I’m having a really hard time at work now.  Part of it is the Protestant Work Ethic that saturates U.S. culture: you know, the whole work yourself to death thing and somehow you will be rewarded.

By the way, if you work as hard as I’ve been working and you’re Autistic, you will not only not be successful, you may burnout.

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Posted in Autistic Identity

From the Archives: The View of Autism from the Cheap Seats: Cure Talk and Autistic Culture

Here’s another old blog I’m bringing back!

Yesterday, I heard someone say at school that she was signed up for the Autism version of some training the public school folk have to attend each year.  She’s our Title teacher, who comes out to work with kids, via the taxpayers.  I wanted to ask her if an Actual Autistic person was teaching it, but I’m selectively out at work right now; my colleagues who can help me know I’m Autistic, but my principal just officially knows my husband and son are Autistic.  She’ll do the math at some point, but for now, if I need help, my colleagues can help me pretty readily.  At any rate, this is an issue I’m forever concerned about: Autistic “training” for teachers that’s usually designed by people who believe in helping us “manage” our Autism by helping us to “pass” as neurotypical.  This ends up passing on a whole bunch of information that is, in fact, harmful to actual Autistics.

At any rate, early this morning, I was following tweets by the mind behind the amazing Aspie Mermaid about a class she was in with a whole bunch of nt folk talking about Autism.  They knew SO MUCH, yet they knew nothing.  They likely had been to some of these trainings I mentioned earlier.

And then the mind behind The Silent Wave tweeted about arguing about removing Autism from the DSM, and we batted some ideas around.

These events sparked this post, where I unpack a few myths about Autism from the so-called experts and what’s really true.

Come have a look at Autism, not from the “cheap seats” at those neurotypical-designed trainings, but right in the front row of the box (the best place to watch a musical) or the front row on the floor (the best place for other events!).

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Posted in Catholic leadership, Self-Care

Preventing Overload or Not: The Guilt of Being an Autistic Leader

Just a quick note to say since our school reduced numbers, it has been quieter and the classroom that the family was in is now much more peaceful.   We did the right thing.

Meanwhile, it is hotter than average and I’ve had longer days again than usual, with extra meetings.  I’m getting over a bad cold (which was at least relatively quick in passing).  My pre-arthritis (I can’t bear to call it arthritis yet…) is twingy.  I can feel myself heading for overload.

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Posted in Advocacy, Identity, School Leadership

On Being Without

I had a humbling experience this week.

I had to admit we couldn’t serve the needs a child had and counsel the parents out of our school.

By way of backstory, my own child was kicked from his Catholic school for being Autistic when he was in pre-school.  We ended up homeschooling.  He’s happy, and we’re happy.

It was not handled well and we left our church because we were pushed out, not counseled.

But I just had to do it to another family.

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Posted in leadership

Leadership Strengths of an Autistic Female: Common?

So, I’m in an educational leadership class that had us do the Gallup CliftonStrengths “test.”  In order to do this, you must buy a new, unopened copy of Strengths Based Leadership and go online to take a test.  I think it’s also available to purchase without the book, but for nearly $20, just get the book, too, as you save nothing by just buying the online version.

At any rate, I never would have taken this but for class, however, I found the theory behind the test intriguing, and I thought you all might as well.

The theory behind Strengths Based Leadership is that we ought to focus on our strengths.  We know ourselves, and therefore if we do what we’re best at and leave others, who are better at other things than we are, to do those things, thereby, we can have an effective team.

I know I lost some Autistics there with the word, “team,” because many of us remember the definition of team meaning “ignore the Autistic and/or make him or her do all of the work and claim group credit.”  Believe me, I know.

However, in a functioning model of teamwork, each person does what he or she is best at and together they do better than they ever would alone.  In theory, at any rate.

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Their fight is our fight

Before I closed and reopened the blog, I spoke sometimes about our “cousins” in the Down’s Syndrome community.

Did you know that Iceland is proud to have aborted statistically 100% of its babies with Down’s Syndrome (people with Down’s Syndrome prefer person-first language)?

They are proud.

They are PROUD.

Even if you don’t find this morally repugnant on its face, consider that they are doing increasing genetic testing on Autistics.  Someday, aborting us in the womb will also be a so-called choice.

Iceland, this isn’t okay.

Here’s a Catholic blogger’s take on it with a brilliant unicorn analogy, and even a nod to Harry Potter: http://www.ncregister.com/blog/antonetti/its-a-monstrous-thing-to-slay-a-unicorn

 

Posted in Autistic Identity, Catholic leadership, leadership

Truth and the Renegade Leader

One of the things about being Catholic is that we are called to believe in one Truth (capital T) which is Jesus/God/Holy Spirit…you know, TRUTH.  And this actually fits in line with what I think the Autistic view of Truth is…the idea that there is one factual truth in all things.

But we also, as Autistics, believe in multiple perspectives.  As in, one person’s experiences will affect the way he or she tells the story.  Sometimes Autistics who have not been “woke” to this truth still fight it and believe only one view of events can possibly exist, but increasingly, as one becomes an activist, one learns about perspective, white privilege and so on.

In leadership, there is another kind of truth, I think.

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Posted in Mutism, Self-Care

Unable to Speak: Being Cautious When the World Spins Out of Control

Self-care is important, especially for Autistics.

I’ve been semi-following the events going on on Autistic twitter lately: the Nazi rally and deaths, the watching and decrying of that Netflix series, Atypical, which hasn’t had any Autistic consults so it generally is cringe-worthy, sucky television.  This is on the heels of the health care debate and also in the midst of whether we’re bombing North Korea and/or Venezuela and I had college friends from Guam so I actually know where that is and….

So, yeah, the world right now is getting a bit spinny out of control.

I’ve noticed that we Autistics, likely because we can’t go out as much as neurotypicals, will obsess online with what’s happening in the world and how it’s showing us how the world is going to end.  I’ve been trying to just say some prayers and let God fix it.  Why?  Not because I don’t want to help, but because I know what is likely to happen to me if I’m not careful.  We start school in a little over a week, I can’t lose my voice now.  I can’t have a melt-down now.  There’s never a good time to struggle Autistically, but some times are worse than others.

So I’m careful about how I interact online.  I have to be.  And honestly, with today being the feast day of St. Maximilian Kolbe, the priest who gave his life for another prisoner in Auschwitz, who refused German citizenship just because he couldn’t handle the white privilege and got locked up just because of that, well, I’ve gotta believe he’s got this.

What follows is my account of the first time I was unable to speak.

A few times when I was younger, I remember not speaking because I was mad about something and didn’t want to speak, lest I say something stupid.  I think it was a conscious choice, but now I wonder if it was or wasn’t.

Last night, when I got to my evening class, I realized that I left something at home and as I was searching for a virtual copy, I was struggling to come up with the right search terms.  I was going to have to come up with another version of what I would have brought to discuss, or admit I couldn’t present.  Not a huge deal, since my teacher is understanding and I could have submitted it upon returning home where I would surely have found what I was looking to find.

But during this, I think I stumbled onto the Facebook feed of one of my former students.  A Latina, she has three daughters.  They are all citizens (not that it matters).  Her eldest daughter was legitimately scared, and asking over and over again whether they should be packing since they’re going to be sent back to Mexico.  This, clearly, freaked out the younger girls.

Around this time, I realized that I wasn’t able to speak.  I talk to myself a LOT.  I like to hear the sound of my voice and rehearse things I’m going to say.  I was sitting alone in a room, and suddenly, I couldn’t speak.  I couldn’t decide if I was faking or not.  I started panicking.  Then, I remembered the Autistic Twitter Universe talking about how people were internalizing the pain of others today (moreso than usual) and it was going to be a hard day.  I remembered my husband losing his voice at work when he was stressed.  In his case, it got better when he came home.  I texted him and then decided to tell my teacher, in writing.  Fortunately, he’s easy.  We had a conversation while I wrote and he spoke and he said I could leave or stay and we’d make things work.  We did, as it happened.

Here’s how the experience went:

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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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