1:20am August 25, 2013

➸ Trying to find the right words: auti-stim: I hear and read about the severity of autism related issues...

I hear and read about the severity of autism related issues typically getting better as people grow up. They learn coping skills, good and bad ones, etc.

I’m not.

My issues haven’t gotten better or less impactful on my life. Each year is harder.

I’ve lost skills, or levels of…

It’s very common but it doesn’t fit the stereotype so people don’t talk about it.

But I read some studies that found between 1/6 and 1/3 of autistic people losing abilities during adolescence. Some got them back when adolescence was over others did not.

These things can also happen after adolescence especially in the form of burnout.

I and many many others I know have a condition called autistic catatonia. In which autistic people movement difficulties (including cognitive and sensory movement as well as physical) become more pronounced with time to the point of severely interfering with daily living skills.

It can be extreme enough as to cause people diagnosed with AS to lose the ability to use speech. Meaning people who never had a speech delay to begin with. I had a speech delay / regression /whatever you want to call it in early childhood, but many people who have lost speech (or lost useful speech) to autistic catatonia don’t even have that history.

The only thing they’ve found that seems to predict autistic catatonia is social passivity in childhood. But that’s not universal.

In practice what it means is that inertia becomes severe, you can freeze during the course of movements, you can have trouble starting and stopping and switching and all that, you respond better to cued or automatic movements than to one’s you try to initiate on your own, many aspects resemble Parkinson, and you may have more difficult using speech for communication or lose it altogether. This can have a fluctuating pattern or a progressive one.

In practice what this means is that for instance if someone hands me a toothbrush I can usually brush my teeth (although my mouth is inclined to just chew it instead of bruising), but I would only once in a blue moon be able to go and find the toothbrush and do it on my own. Everyone is different but I respond best to physical things like holding the object, rather than being verbally cued. I can do very intricate things with my hands if the objects I am working with cue me in the right way, but without those cues I may be totally unable to do anything, or is hit or miss what I can do.

Most people have not heard of autistic catatonia and my guess is there are tons of people running around with these problems, whether or not they’re severe enough to be diagnosed. Within ANI alone there were enough for apparently a large meeting of people experiencing these issues the year or two before my first Autreat.

The professionals don’t have the whole story though. Autistic people report things like more sensory issues and shutdowns and overload. Professionals focus only on motor issues.

Also some autistic people have speculated that just as with post polio syndrome, the people who get it may be more likely to be the ones who pushed ourselves hardest to overcome our disabilities.

And that’s just one of many ways autistic people can experience more difficulties functioning over time.

Another common one is burnout.

Another common one is that add you get older you’re expected to do more and autistic people can have trouble keeping pace with the expectations.

There are tons of reasons and Josiah already linked to something I wrote detailing as many of them as I could think of. I wrote it because people were asking me this all the time. Also because I wish I’d had something like that to read when I first encountered the autistic community and the first people I met only talked about improving during adolescence, and I wondered if I was done kind of freak.

And especially. Especially. I wish I’d known when it started happening to me. I can’t even describe the amount of grief I and my family would have been spared. There’s no way to quantify the hell that happened from not knowing. Not just specifically about autistic catatonia but all the rest too because it’s a combination..

Anyway sorry for rambling but I feel like it’s kind of my duty to alert people to the most severe forms of this because people haven’t heard of it and it can be misdiagnosed as anything from mental illness to dangerous neurological degeneration. And the meds they give when they assume it’s mental illness can actually make this far worse for many people.

And just…. yeah. This stuff is super important and super overlooked by most people. In all the many forms it takes.

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