Month: April 2019

Advocacy comes in a lot of forms.  The kind I do is mostly the socially-acceptable type.  I go through the appropriate channels to speak to the appropriate people.  I politely make an annoyance of myself while asking for change.  Sometimes, this even pans out into actual change. 

I am massively privileged in my ability to do this.  I am, at first glance, a \”functional adult,\” sufficiently \”normal,\” and as such, granted the basic respect most humans give a stranger.  I am fully verbal most days, and my autistic oddities can, on shallow inspection, be shrugged off as simply eccentricities rather than disabilities.  As such, people sometimes listen to me.  What I do is the most acceptable form of self-advocacy. 

The author of this article has clearly led a very different life.  They have experience with institutions, with nonspeaking people, and with oppressive support services.  This makes their words very important to understand. 

\”All behavior is communication\” is a noteworthy philosophy here.  Babies cry if they\’re wet or hungry or in pain.  The fact that they have no words for their distress doesn\’t make it any less communication.  If a child never develops sufficient speaking capabilities to be \”normal\” that does not impede their ability to communicate.  It only impedes our ability to understand. 

Another note about self-advocacy, and advocacy in general: it generally does not make you friends.  This is even true with the most polite self-advocacy that I do.

Most recently, I advocated for myself, the restaurant workers, and my family, when I found us in an excessively loud restaurant environment.  I measured the sound levels in the room and found they were around 90 decibels.  Also known as \”gives you hearing loss in less than 2 hours\” ranges.  Now, this was vastly unpleasant to me, so I put in earplugs… but my family couldn\’t hear each other talk… and the restaurant workers would naturally have shifts longer than 2 hours, so they\’re pretty much doomed to hearing loss. 

The waitress appreciated my concern, but her manager really didn\’t.  So I\’m sitting there wishing I could just melt into the floor, and the guy is explaining to me that the restaurant environment is \”important\” and other peoples\’ enjoyments matter also.  I have a hard time making an ass of myself on purpose, but I really should have.  The noise level really didn\’t drop much at all after I complained. 

Can you imagine if I\’d instead had a meltdown at the table?  Bet it would have dropped the noise level really really fast, with all those people stopping their conversations to stare, and the musicians pausing their routine to to do same.  But the interruption would likely have only been temporary, with my family being asked to leave, I\’m sure.  Still, if the reason was known (for example, if I was screaming \”it\’s too loud!\” repeatedly), it might make people think. 

Both methods are self-advocacy.  One is distinctly less socially-acceptable than the other, but both are valid forms of communication.  They don\’t become invalid just because someone refuses to listen to them, or doesn\’t understand. 

Please, read this article and its examples of advocacy.  If you have nonspeaking or low-verbal people in your life, consider their behaviors in the light of self-advocacy.  

This is one of those rare autistic points of view on meltdowns. Because they’re mistaken for tantrums in small children (they’re not tantrums and shouldn’t be treated that way), and are considered extremely socially unacceptable, few people are willing to talk about them. The vast majority of those that are willing, are professionals or parents, as the author mentions.

Professionals and parents have valuable things to tell us about meltdowns. But nothing replaces firsthand experience. Unlike most of the things I link on this blog, this article is not a textwall. It includes comics and artistic illustrations, each of which includes an accessible text description.

A sidenote about accessible text descriptions: they’re meant for the blind or otherwise visually impaired. The idea being, if you can’t see the picture very well (or at all), you can instead read the description of the picture and get the gist of what it’s trying to convey. But like closed captioning, they can help populations they weren\’t intended to help. As a person with vision corrected to 20-20, I should reasonably have no use for text descriptions of pictures. However, possibly due to the weirdness of my brain’s detail processing, I find it can be useful to read someone else’s interpretation of what’s happening in a picture.

This is especially true for art, and I found the descriptions invaluable in this article. They pointed out details I’d completely missed when I looked at them myself. For depictions of this particular subject, it was valuable to have those descriptions around.

Even after reading this description, I’m uncertain as to whether I’ve experienced meltdowns in my life. I have had the immense privilege of having my own room when I was young, and usually having someplace reasonably safe to flee if I can’t handle things while out of the house. Sometimes that’s just the bathroom, but if it works, it works. This lets me escape situations when I’d start getting agitated the way the author describes here. At worst, I’ve socially-ineptly had to shoo a friend out of my room, or had to go sit in the car instead of socializing with my family members. My actions in both those situations hurt feelings, but don’t really compare to the situations and pain the author describes here.

I do think I experience the building up sensations and low energy effects described here. They just don’t end in an explosion, they end in me hiding until I calm down. Or canceling everything in my day so I can go home. Again, I have the privilege of making those decisions to leave. Not everyone does. Especially children, who have far fewer choices in life than adults.

Regardless, I found this point of view piece very educational, and I hope you do too.