Key Points
- Look for autism residential programs that offer more than supervision—focus on joy, purpose, and real community integration.
- Quality autism housing means meaningful connections, not just caretaking. Choose programs with a strong mission and future vision.
- Visit in person, especially on weekends, to assess if residents are engaged, active, and supported beyond basic needs.
- Finding the right autism program starts with readiness—trust, flexibility, and knowing what really matters for your child’s growth.
After 35 years raising my son with profound autism, I’ve learned a thing or two about finding good residential options. As parents of severely autistic adults, we all face that gut-wrenching question: “Where will my child live when I’m no longer able to care for them?” Let me share what my wife and I have discovered along this journey.
What Matters Most in Residential Programs for Severe Autism
My son is 35, nonverbal with an IQ under 50. He has PICA behavior, seizures, a curved spine, and still needs nighttime diapers. Finding appropriate housing for adults like him isn’t just challenging – it’s essential as we parents get older.
The 5 Things I Look For in a Quality Residential Program
1. A Mission That Goes Beyond Babysitting
I want to see a program committed to giving our kids real lives – not just warehousing them. When visiting programs, I ask myself: Are they creating meaningful connections? Are residents experiencing joy and purpose? Are staff embracing each person’s unique gifts?
In our own program, we believe every person deserves a life filled with purpose and meaningful connections. We’re committed to seeing the value in every individual, regardless of their challenges.
2. A Vision for Growth and Community
Look for organizations with clear plans for how they’ll support residents long-term. The best programs have a vision for integrating residents into the broader community while providing the specialized support they need.
We’ve built our program around fostering lifelong growth. I refuse to give up on anyone’s potential to learn and experience joy – and you shouldn’t settle for a program that has lower expectations.
3. Track Record and Trajectory
Where is the program now, and where are they headed? When we started our nonprofit, we had just two people. A year later, we’re serving twelve families. We bought our first house and expanded into respite care. This growth shows stability and promise.
Ask about their history. Have they shown they can adapt and evolve? Do they have plans for the future that align with your child’s needs?
4. See It With Your Own Eyes
Nothing beats an unannounced weekend visit. I’ll never forget walking into one facility and finding residents crammed around a single TV while others sat alone in their rooms, stimming and staring out windows.
The best programs have engaging activities seven days a week. They’re out in the community, not just stuck inside. They’re learning, exercising, socializing – living lives worth living.
We started with a respite program where adults can spend nights away from home, building independence before transitioning to full residential living. This step-by-step approach builds trust and skills simultaneously.
5. Know Where You Are on Your Journey
This might be the hardest part. Are you ready to trust others with your child’s care? Can you accept that not everything will be perfect?
Some parents come to us expecting their child to always be the top priority among residents. Others can’t handle a scratch from a nature hike or unwashed dishes in the sink. If you need perfection, you’re not ready.
We commit not to kick anyone out for behavior issues. Our staff is trained to handle biting, hitting, and property damage. But in return, we need parents who understand the realities of group living and can be flexible about the small stuff.
Finding Your Way Forward
Finding the right residential program means finding the right match for where you and your family are right now. Look for programs that provide joy, purpose, and community – not just supervision. Visit in person, ask tough questions, and be honest with yourself about what you need.
Our kids deserve lives filled with meaning and connection. With the right residential program, they can have exactly that.
Transcript
Mike Carr (00:05):
Welcome back to another episode of Autism Labs and the journey that we’re all on with our severely or autistic kiddos. Today I’m going to give you five tips. Five tips when you’re looking for residential housing for your autistic child, adult who’s severely, profoundly autistic and has probably been kicked out of other programs. So last week I talked about all the Hoba Lu, about RFK Junior. Since then, there have been two factions, unfortunately, forming the National Council on Severe Autism, the Profound Autism Alliance on one side of the fence, who sort of represent ARC population, the autism community, the profoundly autism community, and then a lot of other folks, autism speaks, autistic self-advocacy network, autism, society of America. On the other side, and I don’t want to take any political side, I think everybody’s in agreement on one thing that I talked a little bit about last time.
(00:57):
There is a need, especially for the folks on the lower end of the spectrum, like our 30 5-year-old son who is nonverbal iq, less than 50, has PICA behavior, has seizures, has a curved spine, sort of still has to wear a diaper at night when he goes to bed. A variety of issues that we’ve all experienced as parents with those kiddos, there is still a need for services. And more importantly as we get older, like me, old guy, really old guy, finding a place for them to live when you can’t take care of ’em anymore. And so that’s what this podcast is going to be about. Five tips that my wife and I have come up with as we’ve been on this journey for probably longer than most of you, because again, our son’s 35 years old. If your son is in that same age or daughter’s in that same age, then you’ve probably been on the same journey.
(01:43):
For the rest of you, here’s some things that we’ve learned. So number one, you can find an organization that’s nearby that will serve supposedly, supposedly this population. What’s their mission? And I’ve never been a big proponent of mission statements, but I do think it’s important to look at this. And so we started a nonprofit to serve this community. And our mission isn’t great necessarily, but I think it’s pretty good. And so here’s what it is. We believe every person deserves a life filled with purpose, joy, and meaningful connections, meaningful connections, not just glorify babysitting. We want your autistic son or daughter to have meaningful connections with other folks like them and other folks out in the community, the neurotypical community. We are committed to transforming how the world views and engages with adults with IDD and autism, embracing the unique gifts and the talents that add value everywhere they go.
(02:38):
And so I think looking for an organization that really wants to provide ongoing learning joy activities every day out into the community where they’re living enviable life, where your son or daughter, when you look at their lives, where they’re living and how there’s love around them and how they have other buddies that may be all sorts severely autistic or multiple IDs, but they get along together like bros or brother and sister. That’s pretty cool. And we actually have that going on at J 13, albeit in a fairly small way. And then what’s the vision? What’s the vision for the nonprofit? So ours is to grow community of adults with IDD, including those with higher levels of need through comprehensive residential programming that integrates community-based supports and fosters lifelong growth. So we are not ever going to give up on someone. We believe that there’s always an opportunity for growth.
(03:29):
There’s always an opportunity for learning. Most importantly, there’s always an opportunity for joy and fun and excitement and energy. And our crew, our team believes this too. And that’s the environment I think you want to look for in any nonprofit. When Kay and I went around the country a few years ago looking at these programs, it was interesting to go on weekends when the regular staff quote is off and you have a skeleton staff, what’s everybody doing? And we were horrified, and you probably were too. It’s like, oh my gosh. I can remember going into one place and everybody was crammed into the cafeteria around one TV set, and there was one staff person there, and we walked the halls and found a few of the residents in their rooms alone by themselves stemming looking out the window, obviously not having any fun. That was their weekend program.
(04:21):
Is that what you want for your son or for your daughter? I don’t think so. Right? Certainly not for our son. So this idea that seven days a week we’ve got programming and they’re out in the community and they’re doing things, or if they’re stuck in the house, there’re going to be activities going on, learning table exercises, exercise, physical exercises, stretching, exciting social things. This is what we have to have and I think need to really look for. Don’t compromise on this. So the other thing that I think is important is where are they now and where are they going? So the mission, the vision sort of speaks to maybe their dreams, but what’s happening right now, and quite frankly, we don’t measure up very well to some of the other programs so new. But on the other hand, we couldn’t find any program like ours.
(05:10):
So I mean, I’m not sure there’s anything to really compare us to. I suspect there are, but one year ago, so one year ago we had two people in our program, our son and a buddy, not much of a program. Since then, we’ve grown. So today we’re serving 12 families. 12. So we’ve gone from two to 12 in about a year, and we’re going to have 14 this summer in our summer camp. So that’s pretty good growth and we’ve learned a lot. And well, we had to get a van, a big van, transit van with 15 seats to take folks from the house. This nexus of the activity out into the community, crux climbing gym, a trampoline park, a place outside that’s got water and falls and hiking and whatnot. Basketball courts, I mean just a variety of museums, who knows what, but this idea that they’re getting out every day and doing something cool and fun and different, not every day is the same, not every week’s the same.
(06:06):
We’re trying to mix things up. So what proof, depending on how far along the organization is, you’re looking at the residential program, you’re looking at what are you seeing happening? And I mentioned the trips that we took, the onsite visits during the week on the weekends, talking to the staff. That’s so important because boots on the ground, you just see things as a parent that you know can’t get watching videos, curated videos, or reading a website. So from our standpoint, what we’ve done recently is we just purchased our first house. The way our program works is we have a day program where we get to know the kiddos and the parents and they get to know us. Then the next step is this house, which is a respite house. The idea is, and we’ve started doing this for our son and one other guy, and here in another week we’re going to have three guys all there at the same time overnight.
(06:55):
They get to spend nights away from home. And some of these folks, some of your kids maybe have never gone away from home except to visit relatives. So it’s a big change for them. They’re usually used to structured environments. They’re usually used to the same kind of thing. They don’t take well the change. And so respite program where you’ve started is the first step in getting them unshackled, uncoupled, untethered with just one bedroom, one house, one repetitive environment, day in, day out. And it’s a bit scary for mom and dad too. So the trust that parents are placing us and everything is part of this journey. And what we’re finding is they’re having so much fun, they’re just having a great time that our son looks forward, he starts giggling and laughing when he knows he’s going to go to the house for an overnight.
(07:43):
And his buddy, I think is the same way. And so this idea that they’re there together, we’ve got staff of course overnight, and they get to do what, 20 something, 30 something year olds do together, a bunch of guys or whatever, or guys and gals. We haven’t gotten to that point yet, but we’re going to go there and we’ll have to have, of course, a little more staff and make sure that everyone behaves at night. But that’s another problem. But the point is it’s fun, it’s exciting, it’s adult appropriate, they’re doing things that are neat. And that’s the transition to full residential, which we do not have yet. Okay, so we just purchased our first home with another couple, and that’s where we’re at. We’re expanding the respite program, respite, not just for the kids, the families, the parents that they get a night or two or a weekend or a vacation away from their child, their adult child.
(08:29):
And it’s a fun program that precursor to residential. The fifth step, and this is the most important tip, is are you at the right place on your journey when you’re looking around? What we do is when we get someone in the program, we make a commitment, we’re not going to kick ’em out for behavior. So if all of a sudden they go bite somebody or punch somebody in the face or kick a window out, our staff is trained on how to handle that. And parents don’t believe us because they’ve been in these programs before and they’ve gotten kicked out. But we’re committed to that. However, we do vet folks before they get into our program. And this is just critical because if the parents, if you guys are not at the right place in your journey, it’s not going to be successful. And what do I mean by that?
(09:14):
I mean, you can’t expect perfection on everything. It just ain’t going to happen. And we’ve met some parents where their child’s number one priority always. And if there are two or three other guys spending the night respite and there’s a problem, they want, first and foremost, their child always get priority attention. And that doesn’t always make sense. Lemme just be honest with you. If their son’s fine sleep in bed and there’s commotion out in the common area and we can’t check on him maybe as often as we normally would, well it’s not going to happen. And that’s just the way it is. So you need to decide upfront what do you require perfection on and what things are you willing to compromise on? And if you’re not at that point in your journey, at least for us, and I think for most programs you’re going to look at, they’re probably not going to want you because there needs to be this understanding that if you trust the staff, and I don’t think you can compromise on that, you have to trust the staff.
(10:08):
If you trust the program and the process, then you have to allow for the dishes are still in the sink. When I come in the next morning to pick up my kiddo, they were too busy last night or they’re having so much fun last night, they do what they normally do, which is get him washed off and stuck in the dishwasher. That’s okay, that’s okay. Or I come to pick up my son and he’s got a scratch on his shoulder. Well, what was the scratch from? Well, we did a hike and they’re hiking through some fairly heavy brush. And sure enough he got a scratch, but they had a great time. They all had fun. He didn’t even notice the scratch. Right? So when you go on this journey, the five things, lemme just recap. I think these are all things that we’ve learned. What’s the mission of the organization?
(10:48):
Is it compatible? Is it more than just glorified babysitting? What’s their vision? Right? Where are they going? Where are they moving to? Is it going to be more homes, a community setting, more people involved of like minds? Where are they now? Can you trust where they are? Have they shown progress and growth? Do they look like they’re stable? And I’m not sure we do yet, but we’re trying to get there. Number four is the proof boots on the ground. What’s actually happening now? We bought our first house, we now have three people in the respite program, 14 people in the summer camp. So we’re not huge, but we’re making progress. And I think programs you’re looking at, you need to see that progress too. And then last, and most importantly, are you at the right place in your journey? Right? Are you willing to sort of go in and say, Hey, here are the things that are really important to me that I’m not going to compromise on. And here are the things that probably aren’t that big a deal. Hope this helps. Talk to you again next week. Bye-bye.
