Autism Transition to Adulthood: Tips for Parents and Caregivers from Transition Specialists

In this episode, the Round Rock ISD team emphasizes that successful transition for young adults with autism requires individualized, out-of-the-box approaches tailored to each student’s interests and strengths, including small motivators and safe spaces for self-regulation. Parents are encouraged to gradually teach life skills such as personal care, household tasks, and vocational responsibilities, while also introducing community-based activities in a structured, supportive way. Collaboration between parents, teachers, and specialists is essential, with tools like step-by-step guides, social stories, and visual supports to reinforce learning at home. Building autonomy, self-advocacy, and joy through choice and engagement is key, and mistakes are viewed as learning opportunities. Parents are advised to connect with support networks and to plan for life beyond school, gradually increasing independence while maintaining safety. Utilizing available resources like the SPED website helps families navigate the process and provide consistent, meaningful experiences that promote confidence, skills, and social participation.

See the links below for resources:
Round Rock Destination Life - https://drive.google.com/file/d/1cqFuZ-Kv9D6cy1lDVKRRfRhtcZ5Jc0GN/view?usp=sharing
Round Rock ISD - https://sites.google.com/roundrockisd.org/spedtransitionservices
Texas SPED Support - https://spedsupport.tea.texas.gov/resource-library/texas-transition-and-employment-guide

Transcript

Mike Carr (00:04):

Everybody. Welcome back to part two of our discussion about transition, both before transition, during transition, and then some of the things that happened after transition with the Round Rock school district. We have Will Renfro, who manages the whole transition program for 70 plus students in Round Rock. And then we have Patti Cole, one of the key teachers that's instrumental in changing so many of these kiddos lives. And if you miss part one, please go back to last week and take a look at it because we had all kinds of interesting conversations and we're going to start this week's conversation with out of the box solutions or out of the box thinking. So Patti, I don't know if you want to start with this or will if you do, but I'd just like you guys to share with parents some of the things that you've done or some of the approaches that you've used and what the results have been.

Patti Cole (00:44):

Out of the box is sort of my middle name. So if you don't mind Will. I am always looking for that thing with my young adults, my students that works. If then charts work, yes first, then all those things work, but sometimes they don't. So I continually look for something else. Like last time I mentioned the young man who required three PE classes and then having space for young adults for kids who need time to get away. I always had a getaway spot, if you need to get away in my classroom, here's where you go get away. Not a hidden room. It was an area in the classroom that usually had beanbags, whatever they needed. I had a young lady who needed fingernail polish. It was amazing what just one painted fingernail would do for her. Got permission. And then when she came to transition, that was in middle school, when she came to transition, her mom and I met and she said, what do you think Patti?

(01:33):

And I said, well, what options do you have? And she said, well, my sister has a beauty shop. And I said, oh my gosh, are we back to painting fingernails? And she said, yes, we are. And I said, I think you should go for it. She doesn't transition. Well move her straight into her next life. Please don't make her have to learn a whole another system because our transition program is very, very different from school. So she went straight to her beauty shop. I checked on her last year, this has been a couple of years ago. I checked on her last year and she's doing really well.

Mike Carr (02:00):

Every student is different. And what you guys clearly do is you lean into every person that's in your program. What excites them? How much independence can they have, how much supervision do they need? What activities are nice break activities for them? How much physical activity can you do? Is that the magic? Is that one of the keys to making transitions successful or is there something else in addition to that or that's even more important to that? What do you guys think?

Patti Cole (02:28):

We started with get on the list, parents educate themselves, help your child, discover a voice eye gaze board all the way up to I want, I don't want. And then the key to transition is it's okay to make mistakes. It's okay if it doesn't work. Try something else here in transition. I wrote it down, let them try. It's okay to not be successful, reflect, revise, and do it different the next time. That's what I do here in transition. I have a young man at the meeting yesterday, amazing worker hates to be outside and his opportunities at home are outside. So we are really narrowing him. I mean he's great at it, but he doesn't like to do it. So just listening, listening, listening, listening. Try it. He's great at it, but he doesn't want to do it, so let's try something different. And when he spoke up and said what he enjoyed doing, he enjoys going to this place called the sensory club and he enjoys going there to clean and sanitize, which surprises me. He is a completely social person. Oh Patti, how are you doing? What'd you have for dinner last night? And yet he wants to go. He's by himself completely by himself. It just doesn't fit, but it fits. He's the master of his ship. He gets to decide what he cleans when nobody's there telling him what to do.

Mike Carr (03:44):

I think the thing that you mentioned that's so important, and I want to provide a story that's going to be a bit horrific for a lot of parents that are listening to this, but I think it's really important. It's trying different things, listening and learning from what worked and what doesn't work. So here's the story, and again, we're dealing with folks that have already transitioned out of school. And so we had a group of guys and gals at a bowling alley I think up in Round Rock, which has really cool insides. They have the aquatics, they have the shark mouths where the ball comes out of the shark mouth. The whole environment is an ocean environment. And we had a situation when we had our group there where all of a sudden one of our community members punched the senior colleague in the face and then scratched her to where it was a safety issue for everybody and we had no idea that this was going to happen.

(04:33):

This particular committee member normally is pretty well behaved, and so we had to get 'em outside. We had to call mom, he had to come get them. We had to take the rest of the crew back on the bus. And so we did a post-mortem and we tried to figure out what in the world happened. Why did this person all of a sudden show this really physical aggressive behavior? So here's what we learned. What had happened was it was noisier than normal and there was a longer wait time to get the balls out of the chute for your turn to bowl. So two things sort of cause the anxiety level to rise, right loud noise, which is not unusual for this population. A lot of these kiddos are very sensitive to noise to where they wear headphones if they are in this particular case, this individual is not, it's loud noise in just the commotion and then the wait time.

(05:16):

But the thing that really precipitated this event that we did not know was going on was they had an iPad to communicate because they were largely nonverbal. And one of the colleagues, one of our crew had played a game with another colleague about taking the iPad away and asking 'em, do you want their iPad back? And they say, yes, I do. And she said, well, you can't have it back right now. And they both laughed and they played this game. Well, she tried the same technique with this individual and they weren't at all laughing. They really needed that iPad back. And when she asked them, do you want the iPad back? And they said yes, they shook their head and then she said, well, you're not going to get it. I said,

(05:53):

Here's what happened. So here's what we did. First of all, we let mom know that we were the cause of that behavior. So don't be all fretted and concerned and emotional that your child did something that is new and it's going to cause all kinds of problems. We took complete responsibility for that. And that's important. You need to have that open communication with parents. It's not always our fault. It's not always the parents' fault, but clearly that was our fault. Our colleague didn't get fired. It was a learning experience. So we were very open with the parents, look, we are going to screw up, we're going to have mistakes. Hopefully not like this again because we all learned, but everything is not always perfect. And so as long as there's that two-way communications channel and that as you were saying, try things and learn from what doesn't work, make sure safety is always paramount.

(06:38):

Absolutely. So that's an example of something that we learned from the hard way. We were very open with the parent. We talked about what we were going to do in the future to make sure that did not happen again. It was a learning experience for our team and our staff, not just the person that took the iPad away, but really everybody. And the key lesson here is just because something works well for one person could be the exact opposite for another student or another person in the program. So always be very intentional and very mindful of behaviors. What works for person A but not person B? What does excite them? Will, I wanted to turn this over to you before I go back to Patti. Maybe you have just a different example, but is there anything you'd like to add to that or an experience or a recommendation for a parent to be aware of or something that you've seen that works or that hasn't worked well for you guys?

Will Renfro (07:23):

I'm glad that you asked that because I encourage our parents to look at resources that they can access besides just 18 plus resources. For example, when you have a student that has behaviors that are challenging or that would be unsafe in the community environment, we need to start in the home environment first to work on the skills to be able to be safe and successful in the community with us. So what does that look like for a family? Well, that can be parents taking their child out during the weekends just to different places and locations to see how does that go? What happens? What happens when we go to the grocery store and do grocery shopping? What happens when we go to Home Depot? Those are the ones I hear a lot that parents do with their kids on the weekends, just like every other parent doing their weekend stuff, running their parents. And so that is a key indicator as to what we need to look at as far as what sort of support can we provide to allow that child to be successful in that environment first with the parents because the parents have a lot of, I don't want to say control, but they know their child the best

(08:21):

And they have a lot of influence on their child. So what are you doing at the home environment to help support your child out in the community? And then are they successful there? And if not, how can we help with looking at what you are doing in the community with your child accommodations, different wait times, different spaces, different locations. And then if we are still in a place at the age of transition where we still can't take them out in the community safely, can we look at some of those respite services that you mentioned before? Can caretaker come take them out, maybe go to the same sites that we go to and just get that young adult familiar with that environment? They go from home to that environment back to home first. And if that's successful, then we can certainly start looking at let's have them come out with us and see how successful they can be with us. And so it's kind of taking that baby step first out of the home environment with that support. Because I think parents need to also understand that what we face every day is that we're out in the community with our students. When can, it's a safe environment for them to be in. We have no control over how the community reacts and responds. So your example right there, the cops could have been called

(09:25):

That young adult could have been arrested and taken to jail for that situation because seen as an assault at that point. And we have no control over that. And so I think that's also something that parents really should understand is that yes, we would love to be able to take every student out and work with them out in the community, but really we have some students that just are not quite ready and we want to make sure that they are before we do that or else some serious consequences could occur that we have no control over.

Mike Carr (09:46):

Right. Great comment,

(09:47):

Patti,

Patti Cole (09:48):

When you sent us the email about the questions that you were going to ask us I really liked was challenged by specific things that would span everything you said span everything from living skills, vocational, social and outings. And that is one of the things I would encourage parents at this level, at transition level 18 to 22, my most successful students are those students whose parents got them in their community. They're in Special Olympics, they ride the bus, they go to the library, they've taken an Uber ride because in transition, especially if you have a student with less needs, they would be having an employment and they would be using something like Round Rock rides to get to that job. But riding an Uber is completely different. Take an Uber trip, ride the bus with your child. I kind of made a list of all those areas of things that would help us in transition and help you in transition as a parent because your child goes, oh yeah, I can do that. I've already done that. No matter what level they are now I need to take my woobie. My woobie is whatever makes 'em feel safe.

(10:48):

Everybody around here is like Bruce, the sake of here, you know what, we all have woobie. Everybody has a woobie, something that makes you feel safe when you're out in the community and it's okay that they have something, they feel safe helping them to move into that community and be a part of the community when they're eight. It may only be for 15 minutes and that's fine, go back home. And then you have, as a parent, you have some strategies that you can share with the teacher. The teacher can say, well, when we went out, this is what we did. And the parent, well when we went out, I go back to that, it's really hard as a teacher when the parents want us to do everything at school, it's really hard for us because it's not just an us versus you guys thing. And I'm sure that most of the people who are listening to your podcast are very engaged parents. But that is my encouragement.

Mike Carr (11:32):

Well first of all, I'd love to get that list and we'll put it in the show notes so that any

Patti Cole (11:36):

Okay

Mike Carr (11:36):

Would like to see that list, you can download it or take a look. The thing that you mentioned though, Patti, that I think is worth reiterating is the teachers can't do it all. And everyone that's listening to this should be aware of this term probably have heard of this term fallen off the cliff, right? When you're a child, you're young adult ages out of the school system, 21, 22 in Texas 22, all those supports go away. They're not going to school anymore from Monday, Friday. And it's like, oh my gosh, what are they going to do? And so over-reliance on the school system to do everything is not going to end well, I promise you. And so trying to do exactly what Patti and will have mentioned, find activities that they enjoy in Austin, there's a central market that has outdoor entertainment Friday, Saturday and Sunday evenings it's free.

(12:23):

And our son loves music and he likes being outside. And so what we've discovered as an activity is we'll take him for dinner, we'll sit outside on a picnic table, he gets to listen to music. You get to order the food. It's not that expensive, but it's good food. While he's waiting, we'll buy him a chicken salad because it's a grocery store. So he gets to eat his little hor d'oeuvre. If he wants to run around, there's a park literally adjacent to the central market venue for music that's outside. So he can run around with his colleague, gets much exercise. Some days he does want to do that, some days he doesn't. He has to listen to music, eat his meal. It's a successful event for everyone and it's structured in such a way. So if he does have a little bit more aggressive behavior, it's real easy to get him to take a walk, which usually calms him down. Or if the music's too loud, it's real easy to take a seat a little bit further away so you're not right in front of the musicians. And so whatever that activity is for you as a parent, finding those things, letting the school know about it or sharing those stories, obviously back and forth is going to make everyone more successful. So pay, that was a great example. Anything else that either one of you guys want to talk about though at this point with respect to this topic?

Will Renfro (13:22):

I do want to add, Mike, that during transition services, so one, yes, you can be in transition services until you age out at 21 or 22, but the goal is, and what we really try to work with families to do is to not rely on us until they have to age out. So let's start getting those things in place beforehand. And there are a couple of different ways that we can do that, but we want, our goal is to make sure that you can leave beforehand the age of 21 or 22, because that would be ideal for any student. And I often ask parents, think back to when you graduated from high school at 18, right? You were ready to go. And so yes, we have our friends that it might take 'em a little longer to be ready to go, but they get ready to go really quickly between the ages of 18 and 21 and 22 because they see their peers leaving, they're ready to move on.

(14:04):

And when a parent's not ready to move on, that becomes a concern. So what we really try to do is make sure that the thinking outside of the box that we were talking about earlier is really looking at what services are in place for the student that we can start accessing and help you guys to access during this time. So you don't need to come to school and be with us Monday through Friday. Maybe it's Monday, Wednesday, Friday, maybe it's Tuesday, Thursday, you go to an ISSP or a dayhab because you can share in different activities and share a schedule. So I call it sharing a schedule. Let's look at sharing the schedule with our families as we work with them from 18 to 22. What does that look like on Monday and Wednesday? Timmy goes to an ISSP that they've identified because they enjoy going there. They participate with peers and others that are older, different ages doing different activities that Timmy really enjoys. And then on, I think I said Monday, Wednesday he does that, and then Tuesday, Thursday, Friday, he's with working on some of those skills to continue being able to participate in a great way.

Patti Cole (14:54):

On Friday, he gets to go spend the day with grandma and bake cookies.

Will Renfro (14:57):

Okay, yeah, Friday, he doesn't even have to come to be with us. He can go do something else. So it really is, I

Patti Cole (15:02):

Have one who does that,

Will Renfro (15:03):

A weekly schedule for them and what additional supports are in place that we can help them get to so that they're not with us five days a week and definitely not all day because that is not a great scenario. We're starting to lessen the support from the school district and increase the support in the community is really the goal of what transition is.

Mike Carr (15:18):

What you guys both talk about is so important. And so from a parent's perspective, so many of the parents that we talk to, their bar is first and foremost, and we all agree this is super important safety, right? We want to keep a young adult safe, especially if they're nonverbal, especially if they're more severely challenged and they can't really convey that they're anxious and they can't communicate effectively. The problem with that is for at least our population, in some cases that means they're spending when they age out of the system, a lot of time at home by themselves, and that can be in their bedroom on the iPad, it can be watching tv, it can be playing video games. That is never, ever a good outcome because isolation leads to depression. It leads to acting up lack of structure. You lose a lot of what you guys are enabling and facilitating during transition.

(16:06):

So we're doing exactly what you're suggesting. Pretend that your kid's aging out at 20, not 22, and how can you add elements of joy and fun in their life? And joy and fun doesn't always mean they're going to be absolutely safe from anything, right? We take our group out into the community every day to a crux climbing center or to an adaptive trampoline park or outside just hiking or playing basketball outside. But they're social, they're with folks, they're buddies. And even though a bunch of them can't talk, they can communicate very effectively. And when you put them together and you have the right supervision or the right colleagues, the right environment, you'll see a joy and you'll see adult communications, even though they're nonverbal and growth and fun and excitement that you'll never see by themselves. And so facilitating that sooner rather than later, I just think is hugely important. So thanks for bringing that up. What else do you guys want to mention or talk about?

Patti Cole (16:59):

Spanning everything. And this goes back to that. Let them try it. It's okay to not be successful, reflect, revise for the next time. Teach 'em to cook, teach 'em to clean, teach 'em to do their own laundry. Even if they carry the laundry basket from their bedroom to the laundry room that is being a part, whatever level of engagement they can have. Vacuuming, picking up their own clothes, brushing their own teeth, their own hygiene, any of those things that will help them because something could happen to you. That's the hard conversation that I have learned to have with parents is like, okay, I understand that you think they're going to live with their siblings. Have you talked to those siblings? Have you looked at this big picture? Is your child young adult ready to go live with someone else? What do you do for them that somebody else is not going to do?

(17:43):

And really getting them as independent as possible in all those home areas. But then you can also create it into a work with pay. Have you done your job today on the level you can turn it into a work setting. I pay you to take care of your room. And it's not a bribery, in my opinion. It is really learning that value of money. And then when you go out, did you bring your wallet? Do you have your paycheck with you? That can happen with everyone. But that independence, that thought of, if something happens to me, will they be able to take care of their own needs or translate their own needs to someone else?

Mike Carr (18:18):

I think that is so great. And here's our experience. This is why I think mom and dads that are listening, this is not easy initially.

(18:25):

Think your son or daughter to dress themselves or to make their own bed or to do the personal hygiene when they actually bathe themselves properly in their brushing. It takes some effort. But once you develop a habit, and I did a podcast on habits and how important I think these small habits are, once it becomes routine and ingrained, they don't have to think about it. It becomes much less challenging and give them some freedom. So we'll let our son dress himself. He may come out with mismatched socks. He may come out with, and he has, he's come out with three or four shirts on because he always likes the red shirt on top, but they don't have layers of shirts. He's even come out with his underwear on the outside of his shorts, which maybe you have to correct because he thinks superheroes are cool, right? But it's this idea, does it? Yeah. At least he dresses himself, right? Yes. That's a big win. And I think being tolerant and understanding the end goal is this independence that if they can brush their teeth, even though they really like to brush the front of their mouth a whole lot in the back, not as much, but you can work on that, right? You can prove that skill, but at least get 'em to the point where they'll brush the teeth themselves. Big deal. If

Patti Cole (19:22):

I can share, here's the collaboration piece with your teacher. That's not something that teachers want to touch. Anything that involves any body parts, there's too much litigation and it's okay. But guess what? They have curriculum sitting on their shelf that they can photocopy how to brush your teeth and send it home with you. That way it's consistent every day. How to wash your body. We have social

Will Renfro (19:44):

Stories, visual we can provide, yeah, social stories, visuals.

Patti Cole (19:46):

We have visuals galore. Talk to your teachers and say, Hey, I want to teach 'em how to do laundry. Do you have a step-by-step? That way you don't have to think about it. Yes, we do. And we have people, even if there's not one, our OTs and PTs love to create those things because they're amazing at it. That's that collaboration piece that I'm talking about. We're not going to help your child learn how to wipe themselves or to brush their teeth very much at school. It's just too personal. But we can send you charts home and we can assist you with systems

Mike Carr (20:13):

That assistance is what most parents need. Systems, they just need the systems, the processes, the procedures, the guidance, so they can do that at home.

Will Renfro (20:21):

Recommendations for tools that can help getting an extender to help with wiping. Some parents may not realize that there is such a thing. So once we get that information from the parent, then we can help identify things that can help in the home environment when they're learning that skill.

Mike Carr (20:33):

Let's talk about other things that we've not already discussed that you think are really important for parents to be aware of, or things that you've seen work very well in the school environment that might be a bridge to something that can work after school after they age out. Just what are other tips, techniques, suggestions that you might have that we haven't already discussed?

Patti Cole (20:54):

One of the things is my most successful parents have found a group of people that they can share with a like-minded group of people. Sometimes as a teacher, it's like, how does she know that? Oh, well, she's in that group. And you're like, oh no, she's not in that group. But you know, what did I say earlier? It'll make you a better teacher. Find a group that you can talk to. Find a group of people who know what you're going through. We have SEPAC. We have a group here in Round Rock. It's called SEPAC,

Will Renfro (21:20):

Special Education Parent Advisory Council,

Patti Cole (21:23):

And get in that group and talk. Get in that group and listen, get in that group back down to those top three. Get on the list, get educated. Teach your child to advocate for themselves. However that is, and it goes back to that. You need somewhere to download. You need somewhere to share with people who know. A lot of teachers don't really know. We have no idea what it's like to have a student or child in our homes with the level of engagement that you guys do. And so get with people who do know so that you can really trust their responses to what the questions you're asking.

Mike Carr (21:58):

This is a hard journey, folks, and I think everyone that's listening to this probably understands. No one signed up to have an autistic child or cerebral palsy, a young adult or whatever that complex special need is. And to try to do that by yourself, especially if you're a single parent, I don't think is doable. I've not seen anybody be able to sustain that kind of heavy load. So having that group, those friends is just invaluable. It certainly has been for us. And there are different sources. I mean, depending on where you're in the country, the Autism Society might have a local chapter. You might find some parents there, certainly at school who other parents are in the program with similar kids. That's obviously something that I'm sure Patti, you and Will would

Patti Cole (22:41):

Suggest. I mentioned Special Olympics. That's another spot. Meet parents. Yes, your child's not competitive. Nobody cares. People go there to share

Will Renfro (22:50):

Social activity. The social aspects, peers, parents, parents to parent is another great networking opportunity for parents to meet with others who are going through a situation, right? Very similar situation in the home environment. So what that parent go through, what are they going through now? How did they help with that or get through that? That's really important. We are going to add some resources. There is, I want to point out that Texas has done a really great job at pulling together resources and creating documents and resources and things that will help parents through the process. And one thing that we do in Round Rock is with our transition meeting, when we talk about transition at the age of 14 on, and we actually start earlier than that, we start at the age, well, we start in seventh grade, which is 13. Typically for a lot of our friends, we have an action plan and a coordinated set of activity that is part of that transition form that we have the teachers complete while we have the meeting.

(23:36):

And there is where I use that as an opportunity to really narrow the focus down for parents as a two step. These two things, if you can just do these two things this year, then that will help us with the discussion next year. And I'm taking that overwhelming, oh my gosh, it's so big. What are we going to do? And I'm really kind of narrowing down that focus for them because I'm trying to help them to go step by step. And our parent liaisons here in Round Rock do a great job at helping us to do that as well. And then I also do that with our students. So what is it that the student needs to work on this next year? And I break it down year to year like that so that we can make sure that we're getting those resources in place.

(24:07):

But if you refer parents to the SPED Tex website, you can create a login. Everyone can create a login, and it has all of the special education resources that are available. And in particular, there are some transition related documents. There's a next step to independence that is like a three page document that really hones in on the age range. So from zero to three, there are a couple of things that parents can do. And one of those mentioned is getting on those Medicaid waiting lists that we talked about. And it will just kind of go through those age ranges and really break it down for parents. So we'll include those resources. But I think it's important to really help our families to understand that yes, it can be extremely overwhelming and there is so much information out there, but if you talk with the experts in the area, such as your transition specialist or coordinator for a school district, you talk to your special education parent liaisons, you talk to your special ed teachers because they can be that focal contact of who to go to in the district for more answers that will help them to really identify those key things that need to be accomplished.

Mike Carr (25:02):

What was that website again? Will that you recommended the sped.

Will Renfro (25:04):

It's the SPED tex website.

Mike Carr (25:06):

That was a great conclusion. Will I think on some very important next steps. Patti, do you have any concluding remarks before we end this episode?

Patti Cole (25:12):

Just keep 'em engaged. Keep 'em engaged. Don't hide. Don't be afraid to go out and be unsuccessful. Reflect, revise, try again.

Mike Carr (25:23):

Great. Well thank you both for such a great second episode. And mom and dad, if you have any questions or if you want to continue on this journey, autism labs.com is where we have weekly episodes with parents, with BCBAs, with technologists with incredible school districts like the Round Rock Independent School District. Please stay tuned next week for another episode here at Autism Labs. Thanks again. Bye-bye.