In the podcast, Mike Carr discusses strategies for managing autism water obsession, who may have a genetic trigger causing insatiable thirst, leading to health risks like diluted seizure medications and low sodium levels. To prevent overhydration, Mike and his family have implemented various measures: installing locks on the kitchen and refrigerator doors, using smaller pitchers and marked cups to limit water intake, adding locks and valves to bathroom faucets, using a valve to prevent the toilet from refilling after flushing, and keeping the shower door closed with a valve on the showerhead to prevent its use. These precautions help manage their son’s water intake and protect his health.
Dealing with Our Autistic Son’s Water Obsession: What We’ve Learned
You know what no one warns you about with severe autism? The weird stuff that completely blindsides you. For us, it was our son’s water obsession. I’m not talking about a kid who just likes drinking water – I mean a kid who would drink from the toilet if we didn’t watch him like a hawk.
At first, we thought, ‘What’s the big deal? At least he’s hydrated!’ Boy, were we naive. Turns out, he has this gene that makes him constantly thirsty, which apparently is a thing with some severely autistic kids. And we’re not talking about normal thirst – we’re talking about a kid who would literally drink until he made himself sick, then want more.
The real wake-up call came when his neurologist asked about his water intake during a routine visit. When I described what we were seeing, her face got serious. She explained that his seizure meds wouldn’t work properly if he was constantly diluting his blood with excessive water. I remember feeling my stomach drop – here we were, religiously giving him his medication, and it might not even be effective because of all the water he was drinking.
Then she told us about kids with similar issues ending up in the ER with dangerously low sodium levels. That’s when I really freaked out. I mean, we were just letting him drink water, something so basic and essential, and it could actually harm him?
We felt completely lost. How do you restrict something as fundamental as water without being cruel? We couldn’t exactly put locks on all the faucets… though believe me, we considered it after finding him drinking from the bathtub. It took a ton of trial and error, plus some creative thinking, before we finally figured out a system that worked for us.
Looking back, I wish someone had warned us about this. It’s one of those autism challenges that nobody talks about at the doctor’s office but can completely take over your life.
The Science Behind Water Cravings
So before I get into the nitty-gritty of how we handle this whole water situation, let me try to explain why this happens in the first place. Because honestly, it took us forever to understand it ourselves.
From what the doctors have told us, kids with profound autism often have these weird crossed wires in their brains. The signals that tell you “I’m thirsty” or “I’m full” just don’t work right. It’s like their internal thermostat is broken.
For our son, he genuinely feels thirsty ALL the time. It’s not that he’s being difficult – his brain is literally telling him “you need water now!” even when he’s perfectly hydrated. Can you imagine how frustrating that must be for him?
Then there’s the whole sensory thing. Many kids with autism either love or hate certain sensations, and there’s not much middle ground. Our son? He’s obsessed with the feeling of water – the way it feels in his mouth, the sensation of swallowing, the whole experience. It’s almost like a comfort thing for him.
To complicate matters even more, those seizure meds he takes? Yeah, they make him extra thirsty as a side effect. Talk about adding fuel to the fire!
Once we wrapped our heads around all this – that it wasn’t just a behavioral quirk but something his brain and body were driving him to do – we realized we needed to get creative with our approach. You can’t just tell a kid with profound autism, “Hey, stop drinking so much water because it’s bad for you.” That’s just not how it works. We needed actual solutions that respected what he was feeling while keeping him safe.”
Securing the Kitchen: Creating Boundaries
So first things first, we had to deal with the kitchen situation. That place was like water central for our son. The kid’s smart – sometimes I swear he’s smarter than we are – and he figured out pretty quickly how to sneak into the kitchen when we weren’t looking. Next thing you know, he’s chugging glass after glass of water like he just came in from the desert.
We tried explaining, we tried redirecting, but honestly, none of that worked. He’d wait until we were distracted for two seconds and make a beeline for the sink. It got to the point where I couldn’t even go to the bathroom without worrying he was in there overdrinking.
Finally, we bit the bullet and installed this special lock on the kitchen door. I felt terrible about it at first – I mean, who locks their kid out of the kitchen? But we had to be realistic. This wasn’t about being mean; it was about keeping him safe. The lock we got is easy enough for adults to use but too complicated for him to figure out.
Let me tell you, that lock was life-changing. For the first time in months, I could actually relax a little, knowing he wasn’t in there guzzling water when I wasn’t looking. It’s one of those things you never imagine having to do as a parent, but when you’ve got a kid with these challenges, sometimes the conventional parenting rulebook just doesn’t apply. You do what you gotta do, you know?
Managing the Refrigerator: Portion Control with Smaller Containers
So first things first, we had to deal with the kitchen situation. That place was like water central for our son. The kid’s smart – sometimes I swear he’s smarter than we are – and he figured out pretty quickly how to sneak into the kitchen when we weren’t looking. Next thing you know, he’s chugging glass after glass of water like he just came in from the desert.
We tried explaining, we tried redirecting, but honestly, none of that worked. He’d wait until we were distracted for two seconds and make a beeline for the sink. It got to the point where I couldn’t even go to the bathroom without worrying he was in there overdrinking.
Finally, we bit the bullet and installed this special lock on the kitchen door. I felt terrible about it at first – I mean, who locks their kid out of the kitchen? But we had to be realistic. This wasn’t about being mean; it was about keeping him safe. The lock we got is easy enough for adults to use but too complicated for him to figure out.
Let me tell you, that lock was life-changing. For the first time in months, I could actually relax a little, knowing he wasn’t in there guzzling water when I wasn’t looking. It’s one of those things you never imagine having to do as a parent, but when you’ve got a kid with these challenges, sometimes the conventional parenting rulebook just doesn’t apply. You do what you gotta do, you know?
Bathroom Control: Preventing Access to Faucets
We quickly found out the kitchen and fridge weren’t our only headaches. Our severely autistic son had become absolutely obsessed with the bathroom sink. Something about the running water just mesmerized him – he’d sneak in there any chance he got and drink straight from the faucet like a little fountain!
At first, we thought a simple lock on the bathroom door would do the trick. You know, keep him out when we weren’t watching. But then we realized – what if he somehow got in there anyway? He’d be right back at it with the faucet. So we ended up calling a plumber who installed these special valves under the sink. Pretty clever solution, actually. We could easily control them, but they were totally kid-proof. Even if he managed to turn the handle, not a drop would come out. Problem solved!
Toilet Flushing: Controlling Excessive Water Use
Here’s a fun one – we also had to deal with the toilet situation. Our son would flush it over and over, partly because he loved the water. We got this special valve put in behind the toilet that stops it from refilling after each flush. No matter how many times he tried to flush it, no more water would come up.
Shower and Bath Control: Preventing Water Overuse
Lastly, we had to address our son’s love for running water in the shower. He would turn the shower on and let it run, which not only wasted water but also fed into his craving to drink it. We kept the shower door closed and installed a covering over the showerhead to reduce his ability to access it. Additionally, we had a valve installed on the shower line, which made it impossible for him to control the water flow. If he did manage to turn it on, the water wouldn’t flow freely, preventing him from indulging in the sensation of running water.
Looking Back
Managing our son’s water obsession has been quite the journey. But all these little fixes we’ve put in place? They’ve made a huge difference in keeping him safe and healthy.
Look, every kid with autism is different – what worked for us might not work for you. But maybe sharing our story will give you some ideas if you’re dealing with the same thing. With some creativity and a whole lot of patience, you can figure out ways to handle the water situation while keeping your kid safe.
It’s all about finding what works for your family and rolling with it.
Transcript
Mike Carr (00:08):
Today we’re going to talk about water cravings and how as a parent you can make sure that your son or daughter doesn’t drink too much water because a lot of folks with severe or profound autism have a gene that’s triggered and they almost have this insatiable thirst. So we’ve had to do some things with our son to make sure he doesn’t drink too much water, which dilutes all the seizure meds he’s on. And in some cases we’ve heard from some parents, they actually have to take him to the hospital because it dilutes the amount of sodium in their system. So one of the things that we do is lock the kitchen. Our son’s smart enough to be able to open the door without this. So what we’ve decided to do is have this little lock that comes down. So now he can’t get into the kitchen and he can’t figure out how to open this up.
(00:55):
The next thing we’ve done is on the refrigerator. We have locks on the refrigerators, so you have to push the lock to open it. Then once he’s in the refrigerator, we have a smaller than normal pitcher, so he only gets a certain amount of water versus a larger pitcher. We also have cups that have lines on them so that he only can fill it up to the line and then he has to stop filling it so he doesn’t drink too much water. Throughout the day, we’ll move into the bathroom because believe it or not, he’ll sneak into the bathroom and he’ll try to drink from the faucet.
(01:37):
So what we’ve done is we have a lock on this door so he can’t get into the door. And underneath here there are these little valves that we’ve had the plumber installed for us. Lemme turn this from here to locked right there. Now it’s locked and there’s another valve down here. You do the same thing. So it’s real easy to turn off the water, and now he can’t drink any extra water. Now, believe it or not, he likes the sound of water, not just drinking water. So what we’ve had to do in here is he’ll just flush the toilet repeatedly and every time he does it, you’ll flush it, flush it, and flush it. Ends up using a lot of water. There’s a valve back here behind the toilet that if you turn it now will not refill. So it doesn’t make any difference how many times he flushes it.
(02:33):
There’s no more water coming into the toilet bowl. And then the last thing we’ve done on the showers is we keep the door closed. We put this on top of the door to hide the shower head. Otherwise he’ll open it and he’ll turn on the shower. So we also have this on the shower itself, this valve. So if he turns on the shower, he doesn’t know how to work this valve. So even when he turns the water on, it sort of defeats the whole purpose of him having access to the water in here. And that’s it for today. Thank you.
