From Panic to Planning: Adult Autism Life Skills that Work

In this episode of Autism Labs, Mike Carr begins a series on transitioning to adulthood for those with profound autism, sharing research-based strategies and personal stories from raising his 35-year-old son, Michael. He stresses early planning—starting at age 14 with the IEP—and teaches independent living skills like hygiene, dressing, and communication using tools like visual aids, adaptive clothing, and the TouchChat app. Mike also tackles employment challenges, showing how combining work with activities like climbing brought joy and purpose to Michael’s life. His core message: with the right mindset and planning, even the most profound diagnoses can lead to fulfilling adulthood.

Chapters

• 0:00 Planning vs. Panic: The Transition to Adulthood
• 0:46 Michael’s Story: Profound Autism at 35
• 2:06 When to Start Planning for Adulthood
• 2:50 Brushing Teeth: Challenges & Solutions
• 4:20 Hygiene Routines: Visual Tools in the Shower
• 6:15 Dressing Skills: Clothing Hacks That Help
• 8:08 Communication: How TouchChat Became His Voice
• 10:40 Vocational Journey: From “Unemployable” to Contributing

Transcript

Mike Carr (00:03):

Welcome back to Autism Labs. This week we're going to start a new series of episodes on transition to adulthood and aging out services. Now, depending on where you are on this journey, if you've realized that your child's going to age out of the school system, 21, 22, you may be in panic mode. And we think the solution is planning instead of panicking. And we're going to cover a variety of things over this episode and other episodes today. We'll start with when is too early to start planning. And we'll talk to you about some of the basic things to do when it comes to outside the classroom learning and some of the literature with some article citations about what's worked and what hasn't worked. And we'll certainly share with you allow our own personal experiences. Our son's 35 years old. Michael's profoundly autistic. He's nonverbal, he has seizures.

(00:46):

His IQ is less than 50. He has pica behavior, he picks things up off the ground, sticks him in his mouth. He's aggressive sometimes, although much less so now. So all kinds of problems. And when he was two or three, we had one of his therapists say, just put him an institution. He's going to ruin your lives. You have no idea how disruptive someone like this is going to be. You'd be better off just to forget about him and live your life without him. And we're thinking, oh my God, are you kidding? That is not the solution we want to hear. So we didn't do that, and I'm sure you don't want to do that either. And thank goodness, more enlightened viewpoints have been expressed since then in 2011, so not in the early nineties, but 2011, about 14, 15 years ago, there was a wonderful article in The New York Times by Amy Harmon.

(01:25):

It's called Autistic and Seeking a Place in an Adult World. And I'll put a link in the show notes and in the blog post, you can go take a look at this article and she quotes a high school transition coordinator at Montclair High School in New Jersey. The gal's name is Kate Stanton-Paule. And Kate had a really good comment. There's a prevailing philosophy that certain people can never function in the community, but I don't think that's true, and we don't think that's true either. And with the right teaching, the right environment, we've seen the most severely, profoundly autistic, most aggressive behaviors actually fit in an amazing way. And so the article talks about a journey that she takes students on and how getting 'em out of the classroom and into a community or back at home and teaching them basic life skills is really important.

(02:06):

So how early did you start? Well, Beth Arky wrote a article for the Child Mind Institute in November of last year called Supportive Living for Young Adults with Autism. And she talks about how for the IEP when they're 14 years old, so the IEP is your individualized education program. When they turn 14, you got to start thinking about these independent living skills, the communication skills, the vocational skills. And so for the rest of this video, I'm going to take you through some of those and what we've learned from our son and what some of the articles and literature says. So let's talk about independent living skills. One of them is brushing teeth. Now, there's some challenges with brushing teeth, and one of those challenges with our son in particular is this is his toothbrush, and he would put a big glob of toothpaste on it and he'd stick it on his front teeth and he turned the button on.

(02:50):

This is a Philip Sonic toothbrush, and he'd hold it steady on the front teeth. He wouldn't move it at all. And so his front teeth were really shiny and bright, and the rest of his mouth got no brushing at all. Another challenge was he'd suck the toothpaste right off the toothbrush in the first second, and so there's no toothbrush left for the rest of his mouth. The third challenge was he would bite down on the toothbrush or we would push too hard. So sometimes he'd bite down on this thing, he'd literally break the stem so it wouldn't vibrate anymore. He loves to push really hard and he doesn't care that he phrase the bristles, which sort of reduces their effectiveness. So what are the solutions? Well, one of them was a timer, a timer that could record a colleague's voice, singing instructions to him with lots of cheering in the background because Michael is an attention hog.

(03:34):

He loves it when people are looking at him and cheering. And you could hear the voice, Michael, ready to brush. Okay, front part of the mouth, 1, 2, 3, 4, 5, yay. Now move to the right side of the mouth or the left side of the mouth and down and up. And so there's this whole song that went on for a couple minutes, and with a colleague helping Michael, it became a habit right on where to brush his teeth, how hard hopefully to push, although he still pushes way too hard. So where he got to the point by pushing this button and following this sing song, this musical cadence, he really enjoys music. He was actually able to brush his teeth independently with just a little bit cheering, high fiving in the background. Okay, shower, personal hygiene. So what are some of the challenges that you may be facing in the future that we've certainly faced too?

(04:20):

Light a touch. I mean, we get Michael in the shower and he would take his scrunchie. This is a scrunchie, and he would put some bodily soap, and then he'd just barely touch his nose. I mean, that's how barely, it didn't make any difference how hard we told him to push the exact opposite of brushing his teeth, right? I'm brushing his teeth, push really hard. It didn't do much good to put all that soap on there, and he barely touching his mouth. So that was one of the challenges. The other challenge was he takes some shampoo and he'd stick it on his head, said, well, Michael, rub it all over his head. Well, he'd rub it just right here, man, that was soap and suds and everything right there, but there wasn't any shampoo anywhere else. Another challenge was at the end of the shower, we wanted him to rinse himself.

(04:56):

We wouldn't rinse himself. He would just rinse his face or the back of his head, and so the shower water would be turned off or he'd turn the shower water off and you have soap over half his body and all kinds of problems like that. So what were some of the solutions? Well, one of the amazing things that my wife did, and she's far smarter at all this stuff than I am, she came up with a series of these pictures and they have little magnets on the back of them. We had a magnetic waterproof board in our shower. And so we actually had these pictures up on the shower showing the sequence of steps that he needed to take. And so he would get in the shower and it would show him, okay, this is how you rinse your head. And he would go through and he'd pull each picture off the board and stick it in a little waterproof basket in the shower.

(05:35):

And so he'd follow the sequence of steps and actually do a pretty good job. Initially we had to do the handover hand teaching and whatnot, but once he got that down and just following these pictures and pulling them down, maybe getting a cheer from the colleague outside the shower door, he did a darn good job of following the steps and learning how to bathe himself reasonably well. Okay, another life skills is dressing himself. Oh my gosh. All right. So you guys have probably experienced a lot of this craziness. So we let him go in there and just do his own thing. Well, of course he'd come out if he'd get his shoes on at all, he'd have two different shoes on his feet, did not care. Very happy. Matter of fact, I think he almost intentionally did it and liked it. He had great trouble pulling his socks up, so he had to get the low cut socks, right?

(06:15):

So he's able to pull these socks up, it doesn't have much of a cuff here, and pull it up enough so that when the shoe is put on the sock actually comes up over the edge of the shoe. Whereas if it was a really long sock, he can never pull it up enough. And so all this stuff down here was crunched up in the front of the shoe and very uncomfortable. So one of the things, dressing himself was trying to give him clothing that encouraged his success or made it likely to be successful. One of those was a low cut socks. Another one was he would put on shirts in an incredible confusing number of ways, never getting in the front on the right. Half the time you come out in the back, the back part of the shirt was on the front, et cetera.

(06:51):

We got reversible shirts. Shirts were the front and the back were exactly the same, and inside and out was exactly the same. It made no difference. He could put the shirt on any way he wanted, and as long as he got his head through the neck hole, he was going to be okay. And you can buy these things, reversible shirts you can purchase too. Then elastic shoe laces and all this stuff you can buy on Amazon. Elastic shoe laces. This is his shoe. It looks like a normal shoe, but he can't tie his shoes. But these shoe laces are elastic, so they stretch. And so he can put his foot in here and he can stretch the shoe laces and his foot will actually go in there and it looks like he's tied his shoe and they're tight enough because they're elastic that it actually stays on.

(07:27):

So the fact that he would sometimes come out still very proud of himself having with the low cut socks and the elastic shoes, and he's got the right shoes and the right feet, amazing. But his underwear is on the outside of his pants instead of the inside. So he comes out and he's got his shorts on, but he's got his underwear on the outside. This happens, right? Parents know this. You guys probably see on kinds of, you just have to laugh at some of this stuff. This is part of the deal. Now, communications when he was very limited verbal, if any, verbal in his early years. And we had speech therapy constantly. They were working on pronunciation in words, and he made a little bit of progress, but not very much. And so we talked about signing. Well, signing wasn't quite as community friendly, but if he gets some basic signs down, there were people that knew sign language, he just wasn't coordinated enough.

(08:08):

He didn't have the fine motor skills where he can make the different signs and everything to sign. So we ended up going with an augmented communication device. And what we ended up going with was just an iPad. This is one of those iPads, and that's what the speech therapist does right now. So he still has speech therapy twice a week, and it's all about how to complete sentences on his iPad using a whole set of symbols. And believe it or not, he's gotten a lot better at communicating with his iPad. And he uses an app called TouchChat. And TouchChat is a pretty cool app. It's like, I think $150, something like that when you first purchase it. So it's not a lot of money, but it has all these icons. And he can scroll through the list. There are pages and pages of these icons so he can form a sentence with these icons, and it's called touch chat.

(08:54):

And there's a link in the blog post on where you can get it. There are other solutions out there. I don't get any money from any of these things that I'm mentioning. They're just things that have worked the best for us in trying it. But there are challenges with the iPad, right? He tends to bang it. And before he got this case, he bang it, bang it, bang it, and we pray he's going to break the screen or something. He can go all over the screen, yucky stuff from eating or whatever, mayonnaise, who knows what he'd spill water on the thing. I mean, I don't know if they're really waterproof. I think they're water resistant, but they're not cheap. Run the risk of water damage it or just run out of power. He'd use it three-fourths of the day and all of a sudden it went dead.

(09:24):

And it's his voice. You don't lose his voice. Okay, so what did we do? Alright, well, we bought two of these. We've got a mini, which is a smaller one, 8.3 inches. And then we've got one that's 10.9, but I think this is the larger one, I'm not sure. And then of course, we have this case. And this case is just a child's case that you can buy on Amazon. This one's from GE Tech. And again, I'll put links in all this and 15, 20 bucks, it's got a nice handle on it. He can pound it and it's got rubber eyes stuff and it has a stand on the back so you can set it down. Now, at the time we set this up, this is a pro tip for all you parents that are watching. We thought portrait was the way to go. So everything's laid out in portrait.

(10:03):

Unfortunately, none of these come with a portrait stand. They all come with a stand in landscape mode. So you lay it down this way. So when you set this up, if you decide to do this, be sure go with landscape so that you can then use the built-in stand to stand it up so that when they're using it, they can just stand it up and they can push and communicate that way, which would work a whole lot better. Now, let's talk about vocations. Our son Michael, was we went to the twc, the Texas Workforce Commission. They took it one look at 'em, took em about 30 seconds, and they said he wasn't employable and we're not going to help you. They didn't even want to mess with the challenges of trying to find a job for him. And there's an article in the Autism in Adulthood publication from May of 2024.

(10:40):

It's called Transitioning on From Secondary School for Autistic Students, A Systematic Review. And the authors of this article reviewed 119 studies regarding vocations and transitions. And it really wasn't all that revealing other than more research needed to be done. And for this population in particular for the severely autistic, there just wasn't enough out there. But there was another article that I've already mentioned that I think was probably the best of the bunch, and that's why Beth aie of the Child Mind Institute, and that was that article on supportive living for your young adults with autism. And that's from November of 2024. That's probably the best one we found. And we looked at a bunch, I've gone out and looked at a bunch of them. So if you want a little more information on vocations and links to what to do and places to go, that article is pretty good.

(11:25):

And you just Google it and you'll find it or do a chat g PT search, and you can take a look at it online. What we've pieced together though, rather than trying to take you through everything that's in the article, because some of it doesn't really apply to lower functioning, what we pieced together is the challenges include finding a job that they want to do and that they'll learn to enjoy. They may not like it that much initially, but with a little bit of effort and persistence, a feeling that they're going to go enjoy it and it's actually productive, right? It's actually accomplishing something useful. So we started out going to a physical therapist office. They had a lot of laundry and Michael liked to do laundry. So we picked the laundry up, we take it home, we'd wash it in our washing machine and we'd take it back and they loved it and he got paid for it.

(12:01):

And we do this twice a day, right in the morning, go drive, pick it up, bring it back. And we did this over and over again to the point where he got sick and tired, we burned him out of doing laundry. Plus it was just a killer. You can just imagine getting in the car twice a day and driving into the physical therapist office to pick up all the laundry. I mean, it was taking far more effort than we were ever going to get back in wages for our son. And the thing we learned is don't do any one activity, even though they may enjoy it to the point where it's, it's just not enjoyable anymore because it burned out. So we went over to the church and he washed windows. He sort of liked washing windows, but he didn't really care about the streaks.

(12:33):

So he'd wash the window, but there would still be some streaks, and that wasn't of a great concern to him. So that didn't work out too well. He went to a gymnasium at the University of Texas campus and he'd wipe the machines, and he loved that. He actually really liked that. What he really liked was a spray bottle and they gave him a bottle of water or soapy water, and he'd spray that thing everywhere, right? He'd go down the hallway and you'd be spraying it. I mean, so you have to sort of watch out what they're going to do with some of the tools of the trade that you give him. But that was actually a job that he ended up enjoying a lot. He went to the YMCA and was sweeping off the basketball courts sweeping off around the pool. And those jobs were interesting to him.

(13:06):

He seemed to have more enjoyment, but the one we found that was really cool, and here's the pro tip for you guys, is a job that mixed recreation with work. We found that at Crux climbing gyms here in Austin. And what they do is our colleague and team learned out is we'll mix fun with work. So half an hour, an hour of rubbing out the cubbies, clean the cubbies or sweeping the floors or spraying the gym equipment or wiping down the mats, and then you get an hour of climbing, which is really fun and exciting. And so mixing work throughout the day with breaks throughout the day has been the magic formula for Michael. And so, and one of his buddies were making more than minimum wage doing those kinds of activities. Now, anyone got paid, obviously when they were working, not when they were enjoying their break time, but it was a great job and it was a great environment for them, and it's worked out really well.

(13:52):

So I'm going to close right now and we'll continue on next week or in a few weeks with the next episode on this. There's no need to panic. The sooner you start planning the better, but it's never too late to start planning. We've seen some couples that have started planning when their kiddos are 18, 19, and as long as you have a plan of any type with the help of professionals, transition coordinators, your special ed teachers, you're going to be in much better position. When your child does age out of the school system, you only turn 21 or 22. And when that happens, life is just going to be so much easier. And if you have any questions about our journey or where we've been, please shoot me an email. It's just mike@autismlabs.com. So Autism labs is all one word.com, and I'll take a look at it and I'll try to get back with you within a day or two, and maybe we can schedule a call or I can put you in touch with one of our team members. Hope you have a great rest of your week, and we'll talk to you again next time. Bye-bye.