In the podcast, Mike Carr discusses strategies for managing excessive water consumption in children with severe or profound autism, 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.

Managing Water Cravings for Children with Severe Autism: A Parent’s Journey

As parents of a child with profound autism, we quickly learned that life often revolves around navigating the unique challenges our son faces every day. One of the lesser-known struggles that caught us off guard was his constant, insatiable thirst. At first, it seemed harmless enough. After all, everyone needs water, right? But over time, we realized that his “water cravings” weren’t just an inconvenience—they were a serious issue that affected his health and well-being.

Our son has a gene that triggers this overwhelming thirst, a condition that many children with severe autism experience. For him, it’s more than just a mild preference for water—it’s a constant, unrelenting urge to drink, no matter how much he’s already consumed. While this might sound innocent on the surface, the effects were far-reaching, especially when it came to his health and the medications he takes. Our son is on seizure medication, and we discovered that drinking too much water could dilute the medication, decreasing its effectiveness and raising the risk of side effects. It was a scary revelation, especially as we learned that some children with similar symptoms had even ended up in the hospital with dangerously low sodium levels, a direct result of excessive water intake.

It was overwhelming. As parents, we were left with a difficult task: how could we ensure our son’s well-being without denying him the hydration his body needed? After some trial and error, we figured out a set of strategies that allowed us to manage his water intake without compromising his health. This is the story of how we learned to handle this challenge, and the lessons we’ve learned along the way.

The Science Behind Water Cravings

Before diving into the practical solutions we’ve implemented, it helps to understand why children with autism, especially those who are profoundly affected, can experience such intense water cravings. Research has shown that neurological factors may play a role. For many children, the brain’s signals for hunger and thirst don’t work quite like they should.

In our son’s case, this miscommunication causes him to feel an intense, overwhelming need to drink, even when he doesn’t actually need hydration. Sensory processing issues can also contribute—many children with autism have heightened or diminished sensitivity to certain stimuli, and water is one of those things that can trigger an overpowering response. Additionally, certain medications, like the ones used to control seizures, can increase thirst as a side effect.

Once we understood the reasons behind our son’s water cravings, we knew we had to approach the situation with a combination of empathy, creativity, and practical solutions.

Securing the Kitchen: Creating Boundaries

Our first line of defense was controlling access to the kitchen, the place where our son was most likely to access water unsupervised. He’s smart—sometimes too smart—and figured out how to open the kitchen door when we weren’t paying attention. This meant that without monitoring, he could easily help himself to excessive amounts of water, and we couldn’t be there to stop him.

To address this, we installed a lock on the kitchen door. It wasn’t just any lock; it was a special one that was easy for us to open but difficult for our son to manipulate. This simple change made a huge difference. Now, we could keep him out of the kitchen when we weren’t around to supervise, preventing him from sneaking in and overindulging in water. It wasn’t an easy decision, but it was a necessary one for our peace of mind.

Managing the Refrigerator: Portion Control with Smaller Containers

With the kitchen locked down, the next challenge was managing access to the fridge, especially when it came to water pitchers. We found that if we left a pitcher of water in the fridge, our son would often pour himself large glasses—sometimes multiple times a day—leading to overconsumption.

To limit this, we put locks on the refrigerator. These locks are simple enough for us to operate but tough for him to figure out. Once we had that in place, we switched out the usual water pitcher for a much smaller one, ensuring that the amount of water available at any given time was limited.

We also started using cups with clear lines indicating how much water should be poured. This helped our son understand that he could only fill the cup up to a certain point, and once he reached that limit, he needed to stop. These visual cues became a useful way to teach him self-control while keeping his water intake in check.

Bathroom Control: Preventing Access to Faucets

The kitchen and refrigerator weren’t the only places we needed to worry about. Our son had also developed a fascination with the bathroom faucet. He loved the sound of the water running and would try to sneak into the bathroom, turning on the sink and drinking directly from it.

To prevent this, we installed a lock on the bathroom door, which kept him out when we weren’t around. But we soon realized that this wasn’t enough. If he could somehow access the bathroom, he could still manipulate the faucet. To solve this, we brought in a plumber to install valves under the sink that restrict water flow. These valves were simple to operate for us but impossible for our son to adjust, effectively stopping the water flow even if he tried to turn it on.

Toilet Flushing: Controlling Excessive Water Use

Another challenge we faced was our son’s fascination with toilets. He would flush the toilet repeatedly, wasting water in the process. To prevent this, we installed a special valve behind the toilet that stopped the water from refilling after each flush. No matter how many times he tried to flush, the toilet wouldn’t fill back up, effectively removing the temptation to waste water for his own enjoyment.

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.

Final Thoughts: Proactive Parenting for Water Management

Managing our son’s water cravings has been an ongoing journey, but the strategies we’ve put in place have made a significant difference in his health and safety. From controlling access to the kitchen and refrigerator to making modifications to the plumbing, we’ve found ways to help our son stay hydrated without allowing him to overconsume water.

Each child with autism is unique, so what works for one family might not be the solution for another. But we hope that by sharing our experiences, other parents facing similar challenges might find some helpful tips to support their own children. With creativity, patience, and proactive solutions, it’s possible to manage water cravings while ensuring your child’s safety and well-being.

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.