The Reality of Raising a Profoundly Autistic Adult. Nobody Talks About This

Some mornings feel impossible but years later, they're the stories that keep us going.

In this deeply personal solo episode, Mike Carr steps away from the topic of guardianship to share an unfiltered look at one unforgettable morning caring for his 36-year-old son, Michael, who is profoundly autistic and nonverbal.

From soaked bedding and piles of laundry to broken technology, sensory-seeking behaviors, endless glasses of water and bathroom mishaps, Mike walks listeners through the kind of morning that many autism families know all too well.

More than a collection of funny stories, this episode highlights an important truth: humor is often one of the most powerful coping tools available to long-term caregivers.

Mike also discusses the importance of finding other parents who truly understand the realities of profound autism, sharing experiences without judgment and building a community where families can laugh, vent and encourage one another through life's most challenging days.

In this episode you'll discover:

• The everyday realities of raising an adult with profound autism
• Why laughter can reduce caregiver stress and burnout
• Common challenges including incontinence, sensory seeking, pica-like behaviors and communication differences
• How community support helps parents feel less isolated
• Why hope often comes from hearing someone else's story

Whether you're a parent, caregiver, autism professional or simply want a better understanding of profound autism, this episode offers an honest, compassionate look inside daily life that is rarely seen but deeply relatable for many families.

If this episode resonates with you, share it with another caregiver who could use a reminder that they're not alone.

Watch the full episode here: https://youtu.be/Z_jX8Lujo_s?si=qNTaKQVnDp2LB8uA

Transcript

Mike Carr (00:05):

Well, this week I'm going to take a break and instead of talking about guardianship, I want to talk about the ridiculousness and the absurdity of what it's like being an autistic, profoundly autistic parent, right? Your child's profoundly autistic, severely autistic, and sometimes you just have to sit back and laugh at yourself. So yesterday morning is an example of this and we have a ring camera downstairs that chimes, which means Michael's moving around, he's out of bed, motion detector, he's coming on up the stairs. And then you hear the thump, thump, thump, thump. Sure enough, he's coming up the stairs. Now he wants his big hug and I love to give our son a big hug as you probably do too with your son or daughter. However, he's reeking of, you know what? Because he's wet his bed again. He does this almost every night despite having an adult diaper on and we've been working on this for years and we just cannot stop him from wetting his bed.

(00:56):

So after that big hug, ignoring the smell, I decide to bribe him. Now I know bad dad, bad dad, bad dad. Dads are not supposed to bribe, but guess where mom is? She's out on a walk. And since Michael is nonverbal, who will ever know? Yay. So I promise him water, which he just craves constantly. He seems to always be thirsty. It ends up, we think it's a genetic thing. And on the way down, he finds a placemat and he starts gnawing on the placemat, looking right at me, waiting for that reaction because he wants dad to react. Well, I just ignore it because mom's not anywhere around and I'm not going to worry about that placemat. I'm not going to fight that battle right now. I've got another 30 minutes to get through. So ignore the placemat, bribe him with water, get him downstairs.

(01:44):

I give him the first glass of water to get him into the bathroom so he can get his wet junkie stuff off. Class two is to get him to carry his wet sheets, blanket pillows, and reeking PJs into the laundry room. So we get into the laundry room, we open the washer and guess what? There's a huge mound pile of wet, soggy clothes from last night that were not supposed to be there. They were supposed to have been moved into the dryer, but last night was pretty darn bad. He was in a real mood. He was pinching the dickens out. I mean, you can see in the picture how bruised my arm is. He wouldn't fold his clothes. He wouldn't do the laundry. He wouldn't put his dishes away. In the kitchen, he took his iPad, which was in this indestructible case. No way could you hurt your iPad in this case.

(02:32):

And he dropped it intentionally on the floor. And what do you think happened? It cracked. The screen cracked. So Kay had to make an appointment yesterday to go into the Apple store and try to get the thing fixed. Now there was a silver lining in this because this was not the first App device that our son had broken. And you probably, if you have multiple devices, Android phones, Apple iPads, whatever, you probably have experienced the same thing. These things get broken. So we had decided to take out an extended warranty. And what I got a bill for yesterday afternoon, which was originally $278, and then they took off the Apple Care Plus discount, ended up being 29 bucks. Yay, baby. We saved some money. Big, big win. Anyway, back to yesterday morning. So we got laundry started. I promised a third glass, glass number three of that magical elixir to get him back into the bathroom and into the shower.

(03:29):

So do you think we make it into the shower? Not a chance. He plants himself on the toilet and he won't move. Now I'm not the most patient dad in the world. So I wait and I wait and I wait. And then I start to lose my patience and I decide, I'm going to cheer him on. Go, Michael, go. G, Michael, go, go, go, go, go, go, Michael, go. And this goes on for what seems like another five minutes and he finally does his business. Miracles do happen. The clouds of heaven park. Hallelujah, baby. So I wipe his bottom and then I get him into the shower. Unbelievable. I can now get him bathed. Then he starts to say something. Now he's nonverbal, but he has approximations for words. And so this approximation is bathroom, bathroom, bathroom, bathroom, bathroom, bathroom, which means he's got to go number one.

(04:16):

But there's not a chance of me letting him get out of that shower, given how much effort it took to get him in. And mom is still not back from a walk and he could probably hold it anyway. So I start bathing him. And so what do you think happens? Well, of course he goes and he has to stream it everywhere. Now we do have a glass shower door. However, it's busted. And the reason it's busted is he's broken the thing so many times. I've just given up trying to repair the thing. As a matter of fact, I had to take one half of the shower. So one of the glass shower doors I had to remove and just leave the other one there, which used to slide nice and easy back and forth. Well, it doesn't slide nice and easy back and forth anymore because he's pulled and pushed on it and the coasters up top are all...

(04:54):

They don't work very well. So I can't really move the door. And so he's streaming around, streaming around. And sure enough, he manages... Well, I'm not even going to say that. I'm not going to tell you whether or not some of that made it outside the shower onto the bathroom floor or not. Let's just say I had trouble controlling it. But mom was still not back from her walk so I had nothing to worry about. I mean, this is some serious father son bonding time. So we completed his shower. Yay. And then with the appropriate amount of help from me, I dried him off and then I made another mistake. I reached underneath the shower sink to a locked cabinet to pull his deodorant out. Now you would say, "Why do you keep his deodorant?" And a locked cabinet underneath the sink. Well, he loves the smell of his bar deodorant, Tom's deodorant.

(05:44):

And if we don't keep it locked up, he'll in the middle of the day get it out and he'll lather his arms. Mind you, his shirt's on. He doesn't care. He lathers the underside of his arms with this stuff. Then he'll smell it and he'll take a bite out of the deodorant, which probably is not the healthiest thing in the world. So we have to keep the deodorant locked up. Quite frankly, we have to keep anything that's in a tube locked up, antibiotic cream, suncream, toothpaste. He'll suck a toothpaste tube dry because he loves the taste of toothpaste. And of course he smears it all over everything and ends up being a huge mess. Now you as parents probably can identify with some of this. Maybe your profoundly autistic child has some similar tendencies. Anyway, we keep all this stuff locked up. Well, so I'm bending over to get the deodorant out.

(06:27):

He sneaks into the kitchen and gets another glass of water, maybe two glasses of water. I'm not sure. So I finally get him back in the bedroom. I'm starting to dress him. We go to the underwear drawer. No underwear. Why is there no underwear? Because the laundry wasn't done last night and he wouldn't fold his clothes. All right. So we finally get a pair of backup underwear and then his helper texts who's supposed to be there by now. She's going to be late. It's like, okay, mom's still out for a walk. No helper. Let's go upstairs and get your breakfast and lunch. So we stredge upstairs to get his breakfast and lunch. Ask him to sit, sit down while I'm helping get his breakfast going. Of course, he does not sit down. He runs into the guest bedroom, bathroom, starts flushing the toilet a lot because he loves the sound of water, right?

(07:09):

Because he's always thirsty. And I didn't turn it off. So I'm thinking, okay, mom's not around. I'm not going to care about that. Flush, flush, flush, water rushing, rushing. I'm working on getting his breakfast and lunch done. Then he gets into the pantry and he gets his favorite salad dressing, green goddess, and he brings an unopened bottle of green goddess salad dressing out. I'm paying no attention to him. He wants me to pay attention to him. So what do you do next? Flushing the toilet doesn't work, green goddess salad dressing doesn't work. He gets a kitchen towel, starts gnawing on it again, looking right at me, knowing that he's not supposed to gnaw it because of course it gets it soggy and wet and ends up gnawing holes in the thing. But mom's not around. I pay no attention. So with the green goddess in hand, with the kitchen towel that he's gnawed on, with the promise of water, I get him back downstairs.

(07:51):

Miracles of miracles. And mom walks in. Yay. Now his helper still hasn't arrived. So I gladly hand Michael off to Kay. And in doing that, I failed to mention the fact that he's maybe had five or six glasses of water by now because it probably just would not help the situation. And I decided not to mention the fact that the bathroom floor is a little wetter than normal and I haven't had time to clean it up because that would not reflect positively on me either as that responsible dad. So you sort of have to just sit back. And later that day, I sat back and I just thought about how ridiculous and how absurd all our lives are caring for a profoundly autistic child, teenager, in our case, adult. He's 36 years old. And what I've discovered and what you probably have too is you hope for the best.

(08:41):

Yo prepare for the worst and you absolutely have to keep a sense of humor about this whole thing. And this also helps me with thinking about and realizing I'm not the only one in this situation and you aren't either.That there are other parents out there, there are other dads, that their moms out there just like you. And if you're having trouble finding them, let me know. Email me at mike@autismlabs.com and I'll try to find the organization that's in your community if you're not aware of them. Or if you're in Austin, we can certainly put you in touch with J13, John 13, our community. We've got lots of parents. So you have someone to laugh with, right? You have somebody to commiserate with. You have somebody to share your stories with because some days are going to be rough. And one of the things that gives us all hope is that, well, tomorrow's probably going to be better.

(09:22):

And sharing those stories and listening to other parents gives you that bit of relief. You can also think about, okay, I don't need to take this situation so seriously. My life's not going to end. I need to just sort of laugh at the ridiculousness of it all. So next week I'll continue talking about guardianship. I just felt I had to talk about how yesterday morning was ridiculously absurd. But as a responsible dad, I did my job very, very well. Anyway, see you and talk to you again next week.