If you’ve ever stood in a bathroom at 6:45 in the morning, soaked from head to toe, bribing your grown child with a glass of water just to get through a shower, you already know what this episode is about. I’m Mike Carr, and most weeks I talk about guardianship, the legal, practical side of caring for our kids as they become adults. But this week I wanted to talk about something different. What it’s actually, ridiculously like being the parent of a profoundly autistic adult. Not the polished version. The other one with wet sheets, cracked iPads and a shower door that doesn’t slide anymore because it’s been broken so many times. I stopped fixing it. If you’re nodding along already, you’re exactly who this is for.
Key Points:
- Caring for a profoundly autistic adult often means living through a daily string of small, absurd crises: Bed-wetting, broken devices, water obsessions and aggression that never make it into the parenting books.
- Humor isn’t denial. Laughing at the chaos is one of the only sustainable coping tools when you’re raising a profoundly autistic adult and there’s no “graduating” from caregiving.
- Locked cabinets, backup underwear, broken shower doors these are the quiet infrastructure of a home built around a profoundly autistic adult and they’re normal, not signs you’re failing.
- You are not the only parent living this. Community whether it’s a local group or one email to another parent makes the hard mornings survivable.
Why Does Caring for a Profoundly Autistic Adult Feel So Relentless?
Here’s the thing nobody tells you going in. It’s not one big crisis a day. It’s fifteen small ones, back to back before breakfast. My son Michael is 36. He’s nonverbal, profoundly autistic and on an ordinary morning I’m managing a wet bed, a gnawed placemat, a pile of soggy laundry that didn’t make it to the dryer and a cracked iPad screen all before I’ve had coffee. None of these things are emergencies on their own. But stacked together, morning after morning they wear on you. That’s the part that doesn’t show up in the clinical descriptions of autism. The relentlessness is the disability in a lot of ways as much as any single behavior is.
Why Is My Autistic Adult Becoming Aggressive?
Michael pinches hard enough to bruise and I’ve got the marks to prove it. He wasn’t in a good mood the night before this particular morning and it showed up in refusing to fold laundry, refusing to put dishes away and intentionally dropping his iPad on the floor until the screen cracked. In my experience, aggression in a profoundly autistic adult is almost always communication frustration, overwhelming a need he can’t put into words because he’s nonverbal. It doesn’t make the bruises hurt less, but naming it as communication instead of “bad behavior” changes how I respond to it. I don’t excuse it, but I also don’t take it personally the way I used to.
What Can You Do When Services Don’t Exist or Fall Through?
The morning I’m describing his helper texted to say she’d be late. My wife Kay was out on a walk. So it was just me, alone, managing everything. The shower, the laundry, the breakfast and the locked cabinets with no backup. This happens more than anyone talks about. Direct support staff cancel, call in sick, or the agency simply doesn’t have coverage that day and suddenly you’re doing a two-person job by yourself. There’s no perfect fix for a broken system, but what’s helped our family is building slack into the routine wherever we can extend the device warranties, backup underwear and locked-up toiletries so that when the human support falls through the physical environment doesn’t fall apart too.
Why Do Autistic Adults Fixate on Water, Textures or Objects?
Michael craves water constantly. We think it’s genetic in our case, and he’ll flush toilets over and over just to hear the sound. He gnaws on placemats and kitchen towels, not because he’s hungry, but because it gets a reaction. He’ll eat toothpaste and deodorant if it’s not locked away, because he likes the taste and smell. These fixations aren’t random. For a lot of profoundly autistic adults, sensory-seeking behaviors are self-regulating, they’re doing something for him, even if it looks destructive or strange from the outside. Our job isn’t always to “stop it”. Sometimes it’s to manage safely, which is why half our bathroom cabinets have locks on them now.
How Do You Stay Sane Caring for a Profoundly Autistic Adult Every Day?
Honestly? I laugh at it. That morning by the time Kay walked back in the door, Michael had drunk five or six glasses of water. The bathroom floor was wetter than it should’ve been and I decided not to mention either fact. Later that day I just sat back and thought about how absurd the whole thing was. Hope for the best, prepare for the worst and keep your sense of humor. That’s not a slogan for me, it’s the actual operating system for this life. It’s also why I keep telling parents to find their people. If you’re isolated in this, the weight of it is so much heavier.
What You’ll Learn
- Why the daily grind of caring for a profoundly autistic adult is made up of many small moments, not one big crisis
- How to read aggression self-injury as a form of communication rather than defiance
- Practical home setups (locked cabinets, backup supplies, device warranties) that reduce daily damage and stress
- Why sensory fixations like water, textures or taste-seeking behaviors are self-regulating, not random
- What to do when paid support or services fall through unexpectedly
- Why humor is a legitimate coping strategy, not avoidance
- Where to find other parents going through the same thing
Notable Quotes
- “Sometimes you just have to sit back and laugh at yourself.” -Mike Carr (00:05)
- “He wants dad to react. Well, I just ignore it because mom’s not anywhere around.” -Mike Carr (01:44)
- “I’ve just given up trying to repair the thing.” -Mike Carr (04:54)
- “You have to keep anything that’s in a tube locked up.” -Mike Carr (05:44)
- “There are other parents out there… so you have someone to laugh with, right? You have somebody to commiserate with.” -Mike Carr (08:41)
- “You hope for the best, you prepare for the worst, and you absolutely have to keep a sense of humor about this whole thing.” -Mike Carr (08:41)
- “I don’t need to take this situation so seriously. My life’s not going to end.” -Mike Carr (09:22)
Resources & Links
- Autism Labs – email mike@autismlabs.com if you’re looking for a parent community in your area.
- J13 Community, Austin – A local support network of parents for autistic children, teens and adults, offering connection and shared experience.
- AppleCare+ (or equivalent device protection plans) – Worth considering if your loved one is prone to breaking phones, tablets or iPads. It can turn a $278 repair into a $29 one.
- Local guardianship resources – Mike covers this topic in other episodes. Useful for parents planning for their child’s legal adulthood.
Timestamped Outline
- 00:05 — Introduction: Taking a break from guardianship talk to share a real morning
- 00:56 — The bribe: Using water to get Michael moving and the ethics of “dad bribery”
- 01:44 — Discovering the unfinished laundry and signs of a rough night before
- 02:32 — The cracked iPad and the silver lining of an extended warranty
- 03:29 — The bathroom standoff and cheering Michael through it
- 04:16 — The shower incident and the broken glass door backstory
- 05:44 — Why the deodorant, toothpaste and other tubes stay locked up
- 06:27 — Getting dressed, missing underwear, and the helper running late
- 07:09 — The toilet-flushing, salad dressing, and towel-gnawing finale
- 08:41 — Reflecting on the absurdity and the value of community
- 09:22 — Closing thoughts and a preview of next week’s guardianship topic
FAQ
What does it mean to be a “profoundly autistic adult”?
It generally describes an autistic adult with significant support needs, often nonverbal or minimally verbal, needing full-time supervision and requiring help with daily living tasks like bathing, dressing and safety management. It’s a term many parents and advocates use to distinguish these experiences from more independent autism presentations.
Why is my autistic adult suddenly aggressive or self-injurious?
Aggression in a profoundly autistic adult is often a form of communication frustration, sensory overload or an unmet need they can’t express verbally. It helps to look for patterns around when it happens rather than treating each incident in isolation and to loop in a behavioral specialist if it’s frequent or escalating.
How do I handle it when in-home support or services fall through?
Build redundancy into your routine wherever possible backup supplies, locked-up items that get misused and a mental “plan B” for common disruptions. It also helps to have a backup contact list of respite workers or agencies so you’re not starting from zero every time someone cancels.
Is it normal for a profoundly autistic adult to have sensory fixations like water or chewing on objects?
Yes, this is very common. Sensory seeking behaviors like flushing toilets repeatedly, craving water or gnawing on fabric are usually self-regulating for the person, even though they can be disruptive or costly for the household.
How do parents of a profoundly autistic adult avoid burnout?
Connection and humor go along way finding other parents who understand the day-to-day reality and giving yourself permission to laugh at the absurd moments instead of only carrying the weight of them. Respite care when available and realistic expectations about “good enough” days also help.
Where can I find other parents raising a profoundly autistic adult?
Mike Carr offers to help connect parents to local organizations. Email mike@autismlabs.com and specifically points to the J13 community in Austin as one example of a peer support network for parents in similar situations.
Transcription
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 a parent of a profoundly autistic severely autistic child. Sometimes you just have to sit back and laugh at yourself. Yesterday morning is an example of this. We have a Ring camera downstairs that chimes when Michael’s moving around he’s out of bed, motion detector, he’s coming up the stairs. Then you hear the thump, thump, thump, thump. Sure enough, he’s coming up. 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, but we just can’t stop him from wetting his bed.
Mike Carr (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 aren’t supposed to bribe. But guess where mom is? She’s out on a walk. And since Michael is nonverbal, who will ever know? So I promise him water, which he craves constantly, he always seems thirsty. We think it’s genetic. On the way down, he finds a placemat and starts gnawing on it, looking right at me, waiting for a reaction, because he wants dad to react. I just ignore it, since mom’s not around and I’m not going to fight that battle right now. I’ve got another thirty minutes to get through. So: ignore the placemat, bribe him with water, get him downstairs.
Mike Carr (01:44): I give him the first glass of water to get him into the bathroom so he can get his wet stuff off. Glass two is to get him to carry his wet sheets, blanket, pillows, and reeking pajamas into the laundry room. We get in there, open the washer, and there’s a huge pile of wet, soggy clothes from the night before that were supposed to have been moved to the dryer but weren’t. Last night was pretty bad, he was in a real mood, pinching me hard enough to bruise my arm. He wouldn’t fold his clothes, wouldn’t do the laundry, wouldn’t put his dishes away. In the kitchen, he took his iPad in a supposedly indestructible case and dropped it intentionally on the floor. The screen cracked.
Mike Carr (02:32): Kay had to make an appointment to take it to the Apple Store. There was a silver lining, though this wasn’t the first device our son had broken, and if you’ve got multiple devices in your house, you’ve probably experienced the same thing. We’d taken out an extended warranty, so a bill that was originally $278 ended up being $29 after the AppleCare+ discount. Big win. Anyway, back to the morning, we got the laundry started, and I promised a third glass of that “magical elixir” to get him back into the bathroom and into the shower.
Mike Carr (03:29): Did we make it into the shower? Not a chance. He planted himself on the toilet and wouldn’t move. I’m not the most patient dad, so I waited, and waited, and then started cheering him on: “Go, Michael, go! Go, Michael, go, go, go, go, go!” This went on for another five minutes before he finally did his business. Miracles do happen. So I cleaned him up and got him into the shower unbelievable, I could finally get him bathed. Then he started saying an approximation of “bathroom” over and over, which meant he had to go again.
Mike Carr (04:16): But there was no way I was letting him out of that shower after all the effort it took to get him in, and mom still wasn’t back. So I kept bathing him and of course, he went, and it streamed everywhere. We have a glass shower door, but it’s busted, because he’s broken it so many times I finally gave up repairing it. I had to remove one of the two sliding doors entirely; the other one doesn’t slide easily anymore because the top track is wrecked. So he’s streaming around the shower, and I won’t say for certain whether any of it made it onto the bathroom floor. Let’s just say I had trouble controlling it. But mom still wasn’t back, so I had nothing to worry about some serious father-son bonding time. We finished the shower, and with the right amount of help, I dried him off.
Mike Carr (05:44): Then I made another mistake I reached under the shower sink to a locked cabinet to grab his deodorant. Why do we keep deodorant locked up? He loves the smell of his bar deodorant, and if it’s not locked away, he’ll lather his arms with it in the middle of the day shirt on and everything, he doesn’t care then smell it, then take a bite out of it. Not the healthiest thing. So we keep anything in a tube locked up antibiotic cream, sunscreen, toothpaste. He’ll suck a toothpaste tube dry because he loves the taste, then smear it everywhere. If your profoundly autistic child has similar tendencies, you probably know exactly what I mean.
Mike Carr (06:27): While I was bent over grabbing the deodorant, he snuck into the kitchen and got another glass or two of water. I’m not sure how many. I finally got him back in the bedroom and started dressing him. We went to the underwear drawer no underwear, because the laundry hadn’t been finished the night before, since he wouldn’t fold his clothes. We found a backup pair. Then his helper texted to say she’d be late. Mom still wasn’t back, no helper yet so we headed upstairs for breakfast and lunch.
Mike Carr (07:09): I asked him to sit while I got his food together. He didn’t. He ran into the guest bathroom and started flushing the toilet repeatedly because he loves the sound of rushing water — since he’s always thirsty, I guess. I didn’t stop him. I figured, mom’s not around, I’m not going to worry about it. Flush, flush, flush. While I worked on breakfast and lunch, he went into the pantry and grabbed an unopened bottle of his favorite green goddess salad dressing, trying to get my attention. I ignored it. So next he grabbed a kitchen towel and started gnawing on it again, knowing full well he’s not supposed to, because it gets soggy and he chews holes in it. But mom wasn’t around, so I let it go. With the salad dressing in one hand, the gnawed towel, and the promise of more water, I got him back downstairs.
Mike Carr (07:51): And then miracle of miracles mom walked in. His helper still hadn’t arrived, so I gladly handed Michael off to Kay. In doing so, I conveniently left out the fact that he’d had five or six glasses of water by then, and that the bathroom floor was wetter than normal and I hadn’t had time to clean it up. Wouldn’t exactly reflect well on me as “responsible dad.”
Mike Carr (08:41): Later that day, I sat back and thought about how ridiculous and absurd all our lives are, caring for a profoundly autistic child or in our case, a 36-year-old adult. What I’ve discovered, and what you probably have too, is that you hope for the best, prepare for the worst, and absolutely have to keep a sense of humor about the whole thing. It also helps me remember I’m not the only one in this situation, and neither are you. There are other parents out there other dads, other moms just like you. If you’re having trouble finding them, email me at mike@autismlabs.com and I’ll try to connect you with an organization in your community. If you’re in Austin, we can put you in touch with J13 our community has lots of parents. Someone to laugh with, commiserate with, share stories with, because some days are going to be rough.
Mike Carr (09:22): Sharing those stories and listening to other parents gives you real relief. You can remind yourself: I don’t need to take this so seriously my life’s not going to end. I just need to laugh at the ridiculousness of it all. Next week I’ll get back to guardianship. I just felt I had to talk about how ridiculously absurd yesterday morning was. But as a responsible dad, I did my job very, very well. See you and talk to you again next week.
