Sudden Autism Behavior Changes? It Might Be Catatonia

Mike Carr (00:05):

Well, welcome back to another episode of Autism Labs, and I want to talk today about how to keep your kid, your son or daughter, who's profoundly autistic, from getting kicked out, right? So you've been on that waiting list for a long time and you finally get into the program, whether it's a day program or respite or even residential. And then there's a big change that you see in your child, your adult, young adult or older teen, maybe a lot more aggression or they start pulling their pants down or there's too much noise or whatever, but it's just a change in their behavior. And one of the things to look at, which isn't all that common, but it's common enough to take a look at it, it's called catatonia. Now you're thinking, oh my gosh, all I need is another chronic condition or disease or some other thing to look at.

(00:48):

I've been down this road so many times already, and I get it. As a parent of a 36-year-old, a profoundly autistic child, we've been there, done that, right? But this is a little different. And what makes this different is if there's a change in behavior, if there's certain things that have happened all of a sudden that aren't normal, it might be taken worth a look at. So I'm going to put up on the screen right now the definition of catatonia, and I'm going to read it to you just so you know what I'm talking about. And this is from the Autism Science Foundation. So they published a two-page PDF on what this is all about. And then the NCSA, the National Council for Severe Autism, republished it yesterday. And so I wanted to go ahead and talk about it today. And that'll be in the show notes and you can download the PDF and I'll put some of this up on the screen.

(01:26):

So what's catatonia? Catatonia is a serious but treatable condition that affects movement, speech, behavior, and automatic functioning. Functioning such as breathing, could be heart rate, it could be temperature regulation. It's often linked to mental health disorders like with people that have autism. So that's why it's worth maybe talking about. Now the key thing here is I think some of the symptoms. And I went through this list and the list will be on the screen now as I take you through it. And you may not notice all of these for your son or daughter, but if a few of these pop up for you, it's maybe worth thinking about. So staring or fixed gaze, just staring at something and not moving. So at dinner, our son Michael will sometimes go into this catatonic state, catatonia, where he just stares at his plate for like 10, 15 seconds and he's non-responsive.

(02:13):

He won't do squat. Now we were thinking maybe these were just little micro seizures because he does suffer from epilepsy and he has epileptic seizures maybe once a month. And we though maybe these were little mini micro seizures, but I'm not so sure now after reading this definition, the problem with him is it's sort of his baseline behavior. And so what we're looking for here are things that have dramatically changed recently. Another thing, trouble crossing thresholds. So your son or daughter's in the doorway and they can't decide whether to go into this room or to go over here into that room. And they go back and forth and back and forth are just super indecisive. And Michael does this constantly at night. Last night he was sitting in the doorway between his main room and the hallway, which he goes down to play his wee and he simply could not make up his mind.

(02:52):

And I sat there and talked to him for a couple minutes before he finally went in one direction or another. Reduced speech or communication. So if all of a sudden you notice a significant drop in their ability to communicate with you, even if they're nonverbal, but they're used to using their iPad and they've got icons on their iPad and all of a sudden they're not using it anymore. What's going on? Or movement freezing or moving very slowly. Normally they move at a normal pace or maybe even an accelerated pace and all of a sudden they're really slowing down. Maybe they didn't have enough sleep, but maybe there's something else going on there. The loss of some self-care or daily skills, like Michael dressed himself this morning, but I had to help him a little bit, which is typically the case. But if he can't dress himself at all, right all of a sudden, and even when I help him if he's having problems, that might be a red flag, new or worsening urinary incontinence.

(03:39):

Now, Michael came up this morning and he was just reeking. He was soaked, so I had to give him a complete shower and that's sort of his baseline, unfortunately. But if all of a sudden this starts happening for your kiddo, the big change in behavior, normally they get up and they're dry or normally they can take themselves to the bathroom, but all of a sudden they're not, probably worth taking a look at. Now all these things fall into what's called the hypokinetic space. So you can see on the PDF hypokinetic space. Next to that though, you can see something called the hyperkinetic space. And this is another class of symptoms that might indicate catatonia. So echolalia or echopraxia, echoing the words or the movements of others. Now sometimes Michael will do this, but not very often. So this really isn't something that we need to worry a whole lot about.

(04:17):

Or maybe much more repetitive movements, whereas Michael was doing a lot of this hand flapping and we finally got him to stop doing that. All of a sudden if that occurs and he's look at his hands and he's just doing this all the time, this repetitive stuff, that might be an indication. Or a weird body posture. All of a sudden he's going around or your son or daughter's going around and they're holding their head a weird way or they're just walking a weird way and you've never seen it before. That is maybe an indication of this hyperkinetic catatonia or self-injury. And this is a real problem. Biting that risk to the point where it's bleeding or hitting the head, all of a sudden this is going to be alarming to you and it might get him kicked out of school or at least you're going to have to go to a different program or vocational situation, part-time job.

(05:01):

This is where you really don't want these kinds of behaviors to continue. So what can you do? And one of the things that's suggested by the Autism Science Foundation is maybe get your camera out, your iPhone out, and you take some video when this behavior occurs and you get a few snippets over a day or two or three and you go into your physician and you say, look, this is what I think is very different than normal. This is not typically what I've seen. I read a little bit about catatonia. Do you think it's worth intervening and trying a drug, a pharmaceutical? Now, none of us want to put our kids on drugs. Many of us already have them on certain types of anti-seizure medication, anti-anxiety medication or whatever it is, but lorazepam is actually an anti-anxiety medication and it's something that for catatonia has known to be effective.

(05:48):

And maybe you've tried lorazepam before, so you're already familiar with this. We have not. I don't know if we're going to do this or not, but if this behavior changes significantly from what Michael's baseline has, just like if it changes significantly from what your son or daughter's baseline has, it might be worth a try. And so that's something to try. Another thing is just to reduce the stress, just environmental things, not as much prompting, not as much insistence on doing something. Sort of like when your son or daughter has a bad day, right? We naturally, and I think you guys probably do too, on a bad day when they get up and they're just not with it, you sort of lower the expectations for that day. Some of the more challenging tasks you may be put on the back burner for the next day. It's sort of the same thing.

(06:26):

If you're noticing these catatonic kinds of behaviors or symptoms, maybe taking some of the more challenging things off the table, which might only increase their anxiety and doing things that are a little bit easier or things that are slower, things that are very structured where they're familiar with it is not going to cause that stress. So if you want to download the PDF, please go to the show notes. It's free from the Autism Science Foundation. I'm not saying this is what's going on. I'm not a medical expert. I'm not a doctor. I certainly cannot give you any kind of medical advice, but this was interesting to us. And as a parent, it might be interesting to you too. So take care of yourself and please take care of your son or daughter too. Hope you have a wonderful week. See you next week. Bye-bye.