We are relaunching the Autism Lab’s website to provide support and resources for parents, caretakers, and siblings of profoundly autistic individuals. The goal is to help families understand and navigate the challenges of caring for someone with limited verbal skills or non-verbal behavior. Information will feature discussions, learnings, and experiences from other parents, as well as invite participation in online communities and podcasts. We will focus on three main areas: jobs, technology, and residential living accommodations. The aim is to provide information on employment opportunities, strategies and technology for autism in creating joyful and purposeful living environments. The podcast will also address the challenges and stigma associated with profound autism and provide support and hope for families on this journey.
Navigating the Journey with Profound Autism: A Path to Hope, Joy, and Employment
Hey there – Mike Carr here. You know, our family’s story with autism isn’t just about us – it’s something I bet a lot of you will connect with. We’re giving our website a fresh start because I really want to create a place where families like ours can find what they need, whether that’s someone who gets it, helpful tips, or just knowing they’re not alone.
I won’t sugarcoat it – this ride has been tough. Some days knocked us down hard. But man, there have been these amazing moments too – times that just fill your heart right up. Looking at where we started and where we are now, it’s wild to see how much has changed in understanding and supporting autism. Things are moving forward, and that keeps me going. That gives me real hope, you know?
The Beginning of Our Journey
It all started back in ’90, when our little boy was just one. They told us he had autism – which was pretty rare back then. We were living in Dallas, and I remember the doctors saying it was like one kid in 10,000. Now? Man, the CDC’s saying it’s one in 36. Wild how much that’s changed. Sure, there’s way more help out there now, more people who get it. But let me tell you – when your kid has severe autism, it’s still tough as hell.
The whole diagnosis thing was a mess. First doctor we saw? Totally missed it. Then the next one hits us with ‘your son’s profoundly autistic.’ Back in the 90s, nobody really knew what that meant, you know?
I’ll never forget this one doctor – had the nerve to tell us to put our boy in a state hospital. Said something like ‘this kid’s gonna turn your whole life upside down.’ Yeah, right – like we’d ever ship our son off somewhere. No way in hell.
Look, I know some of you have probably heard the same kind of stuff – people thinking they know what’s best for your kid, making you second-guess everything. But we stuck to our guns, and I’m telling you – hang in there. We’ve come a long way, and I want to share what we’ve learned, maybe make your path a little easier.
Understanding Profound Autism
You know, nobody really talked about ‘profound autism’ until just a couple years ago. Finally in 2021 they came up with a real definition, which was huge for families like us trying to figure out what our kids need. When they say profound autism, they’re talking about kids with an IQ under 50, who struggle to talk or might not talk at all. But here’s the thing about our boy – just because he can’t get the words out doesn’t mean he’s not taking everything in.
Most folks, when you say autism, they think of Rain Man, right? That movie with Dustin Hoffman. But for a lot of us, it’s a whole different world. Every single day is about looking after our kids, trying to understand what they need, and finding new ways to work with whatever comes up.
The Job Search for Profoundly Autistic Individuals
Finding work for our boy? Man, that’s been a tough one. We started this Facebook thing, ‘Jobs for Autism,’ like ten years ago. Got hundreds of people following now, lots of job posts coming in. But here’s the thing – most of those jobs? They’re all for kids who can manage pretty well on their own. Not much out there for kids like ours.
The CDC says about a quarter to a third of autistic kids are on the profound end. Which means most of the focus goes to the other three-quarters who need less help. Kinda leaves our kids in the dust, you know?
So get this – when our son (he’s 34 now) went to the Texas Workforce Commission, they straight up told us he couldn’t work. Period. But we weren’t buying it. We knew our boy had something to offer – just needed the right fit. After pushing and asking around for ages, we finally caught a break. Found this spot at Crux, a climbing gym in Austin, where he could work with his buddy who’s also got profound autism.
The funny thing is, a climbing gym isn’t exactly where most people would picture our son working. But damn if it hasn’t turned out perfect. He keeps the place clean, wipes down the equipment – you know, important stuff that needs doing. But the best part? The people there just get it. The staff, even the regulars – they’ve totally taken him in. Some of them even plan their workouts around when he’s there. Just goes to show – give our kids a chance in the right place, with the right support, and they’ll surprise you every time.
Matching Jobs with Skills
Look, when you’re trying to find work for someone with profound autism, it’s not just about sticking them in any old job. For our boy, we had to really think about what he’s good at – you know, stuff like cleaning or putting things in order. He’s actually amazing with that kind of repetitive work, and pays attention to every little detail.
But here’s the real deal – the workplace has gotta be right too. You need people who actually get it, who won’t freak out if things get rough. Like, if he has a meltdown, they need to know what to do. It’s all about setting things up so he feels safe and can actually do his best work, you know what I mean?
The Role of Technology in Supporting Profound Autism
Man, all this new tech stuff has been a game-changer for us. Like, who knew a smartwatch could tell when our kid’s about to have a rough moment? It picks up on his heart racing and gives us a heads-up before things get intense. Pretty wild – gives us a chance to step in and help him chill out before it gets too much.
And don’t even get me started on all this robot stuff they’re coming up with. I mean, we’re not trying to replace people or anything – it’s just giving our kids new ways to connect. My boy’s really into these video games and VR things now. It’s pretty cool watching him get into it, doing stuff with other people in a way that actually works for him. Makes me think, you know? Like maybe we’re finally figuring out how to make the world work better for everyone, not just the typical kids.
Overcoming the Challenges
Look, I’m not gonna lie – we’ve hit some rough patches, just like every other family dealing with this stuff. The money part? That’s been a killer. Trying to get decent one-on-one care is expensive as hell, and let me tell you – insurance and government help? It’s like a drop in the bucket.
But you know what? Even with all that mess, I still believe in my gut that our kids can have good lives. Real, meaningful lives. It’s all about getting the right backup – people who get it, places that’ll give them a real shot, and yeah, a community that’s got their back. The trick is figuring out what works for YOUR kid, you know? ‘Cause they’re all different, and what clicks for one might not work for another.
Building a Supportive Community
As we continue on our journey, building a supportive community has become one of the most important goals. That’s why we’re working to create a space where families can come together, share their stories, and find support. Through Autism Lab, we plan to launch communities on platforms like Facebook and Discord, providing a forum for parents, caregivers, and siblings to connect, ask questions, and learn from each other. We also want to offer resources that are grounded in research and data. For example, a recent article in The Washington Post titled Rift Over Profound Autism provides valuable insights into the challenges and best practices for supporting profoundly autistic individuals. Additionally, I highly recommend a podcast I listened to from January 21, 2024, by the Autism Science Foundation, where Dr. Y Ru Chen of Boston University discusses language and communication research for individuals with autism. This research is critical to understanding the challenges of nonverbal individuals and the strategies that can improve communication.
A Path to a Joyful Future
At the end of the day, the journey we’re on is one of hope. We want every individual with profound autism to lead a life that is meaningful, joyful, and fulfilling. With the right technology, community, and job opportunities, we believe a future where individuals with profound autism can thrive is not only possible, but within reach.
So, whether you are a parent, caregiver, or sibling, know that you are not alone. There is hope, there is help, and there is always a way forward. Together, we can create a world where every individual—regardless of ability—can find joy, fulfillment, and a place to call their own.
Transcript:
Mike Carr (00:00):
Well, hi there. My name is Mike Carr and we’re relaunching the Autism Lab’s website for parents and caretakers and siblings of profoundly autistic individuals. This can be a really stressful, disruptive path to be on, but we also think it can be one of joy and excitement given all the new things that are coming about. So just to give you a little bit of a story, our son was diagnosed in 1990. He was one years old. We were in Dallas, Texas at the time. The incidence rate was one in 10,000. Today for many of you, the incident rate, according to the CDC in their April of last year, article and paper is one in 36. So big issues. A lot more parents now are going to be concerned than there were back in 1990. And we took our son to the expert in Dallas, Texas, and he went through a very involved diagnostic process and he came back and told us, no way does your son have autism.
(01:05):
And of course, it turns out that our son not just had autism, but he was profoundly autistic at one point. I can remember back in the early nineties that someone looked us in the eyes, and you guys have probably had the same experience, and it’s so, so disheartening and said, you know what, Mike and Kay, I think you’d be better off just putting your son in a state hospital because the disruption it’s going to create in your lives is you have no idea. And we’re thinking to ourselves, are you out of your minds? This is our son. We are not going to put him in a state hospital and forget about him. And I’m sure many of you feel the same way. Profound autism has a definition that was developed in 2021, and we like it because to us it sort of helps us and helps probably a lot of folks like us understand the Dustin Hoffman and Rainman was not representative of anyone who has profound autism, right?
(02:07):
Profound autism folks are characterized by a variety of things, and not all of ’em apply in every cases, but some of the characteristics of the definition that’s now used by the CDC and others is perhaps an IQ of less than 50 nonverbal or limited verbal skills, perhaps better receptive skills, then expressive skills. So if they can talk at all, their vocabulary is very limited or they do it with icons on an iPad or something like that. However, they might understand more, they might actually receive more and have a better receptive vocabulary. So let’s back up and let’s talk a little bit first about jobs. And we started a Jobs for Autism Facebook page over a decade ago. If you go out onto Facebook and you go for jobs for autism, JOBS the number for autism, you should be able to
(02:58):
Find us. I think we have 700, 800 followers. We’ve got a lot of job postings there. Many of them though are for the higher functioning folks. There are a lot of accommodations, a lot more anyway for those individuals with autism that do have great communication skills or it looks like they might be mainstreamed. The data from the CDC that’s the most recent is somewhere between 25 and 30% of autistic children that are eight years old are profoundly autistic. And that statistic we think hasn’t changed that much. It’s probably gone up a little bit, but that means three-fourths or not. And so most of the press, most of the attention, and I think many parents that may be listening to this understand the frustration we have when you’re talking to your friends and they say, oh yeah, we know someone that’s autistic and they’ve got a job at Home Depot and they’re doing pretty good or they’re living independently are with a buddy.
(03:56):
That’s not what we’re talking about, right? As parents or caretakers of our autistic kids, they’re not going to be able to do all those cool things, at least not without a lot of help. Our son, who was 34, the twc, the Texas Workforce Commission evaluated him, said he’s unemployable. Not a chance, right? A buddy of his, a little bit higher functioning, a little bit more verbal skills, but still profoundly autistic. Also TWC unemployable, guess what? We’ve been able to find a job where both he and his buddy have paid employment, right? This isn’t volunteer paid employment two days a week at a Crux climbing gym in Austin, Texas. It is amazing. And we never thought he could do a lot of the stuff he’s doing there now in terms of his job and it, it’s cleaning stuff and it’s wiping things down and he enjoys doing that.
(04:54):
But there are other things that a little bit higher functioning folks could do as well, and then he actually gets to have some fun. So part of what we’re doing with finding employment for profoundly autistic individuals is matching a job with the actual skillset that they have, whether they can communicate or not, whether they have seizures or not, whether they have behavior or not. And then in an environment that is upbeat, that is in the community, that’s not at night when nobody’s around or that’s isolated and that makes a lot of parents nervous. Well, what if my child has a meltdown? That’s part of the environment we’re looking for is that with the staffing and the supports in place, not a problem. We anticipate issues. We have protocols in place, huge difference. There is no reason in our opinion, for anyone to give up hope on their son, daughter, sibling, brother, that’s profoundly autistic to have a meaningful job, something that they get some joy out of, that they’re actually making a contribution
(05:57):
That the folks in the community see this. We’ve actually had people at the gym change their workout schedule. So they’re there when our son and his buddy and some others now are there too. They get joy out of it. They get fun out of seeing these folks contribute and they help ’em out some. And it’s amazing how folks, when they see profoundly autistic individuals out in the community and recognize the challenges that they’re having and some of the unusual behavior, but that they’re real people and that they’re trying to help out and they’re doing actually a job and climbing wall 30 feet high. I mean, we’ve got all the safety gear there, the belay ropes and all that kind of stuff, but it’s just so much fun and so much joy to see someone that you never thought would be doing this, like our son halfway up this wall’s, a lot of technology available today, and that’s coming out just a wristband.
(06:56):
Some of the smart watches, some of the other fitness stuff can detect heart rate increases, perspiration increases, and a little app maybe or a little alarm on your smartphone. Hey, so-and-SO’S fixing a meltdown. We’ve sensed that there might be a problem right now. Heart rate increase, perspiration increase isn’t always because there might be an issue, but if normally you would not see that, then yeah, that kind of tech might help the trained staff person intervene and say, Hey, what’s going on? And take them out of that environment. It’s causing stress or calm them down before it becomes a real event. You can remember some of the fads and some of the excitement around things that at the time we were very skeptical of hyperbolic chambers and maybe hyperbolic chambers work for some folks, but there was this huge push, oh yeah, you put ’em in this chamber, you pump up the pressure, they get better airflow and that’s going to solve some of these problems.
(07:53):
This was ridiculous. This was just crazy for most people. And these things weren’t cheap. You could go someplace, maybe they had one and pay a whole lot of money for a series of treatments, or if you’re really wealthy, you could buy one of these things and put ’em in your home. And it just made no sense. And so for decades now, there have been these little spikes of this is the new silver bullet, this is the new cure. This is the question that’s going to make all the difference, and we’re very skeptical of that. We’ll try to share with you things that we think have moved the needle a little bit for our son and for others like him. Robotics is pretty exciting too. You think about maybe there’s a way instead of having your son or daughter parked in front of a computer screen playing video games isolated all day long in their room is getting out and enjoying other types of technology. When they go to a crux gym or they go to a video arcade, they maybe can still play the games that video arcade, but they’re doing it in a social setting
(08:54):
With a bunch of other folks like them, and it’s fun and it’s joyous, and they get to take a break and go outside in the picnic table and have lunch and then they could come in and maybe do a little bit of cleaning. So it’s this combination of recreation and of job vocation and of technology using the latest technology that we think is going to hopefully give everyone a much better shot at a joyful, fulfilled, exciting, fun life for their profoundly autistic son, daughter, brother, sister, and for themselves. So we’re hoping to provide a lot of learning, a forum for discussion conversation. We’ll be launching some communities that we would love to have anyone that’s interested, participate in so that we can start to share our own experiences and just try to find people like us, they’re in a similar situation and not feel quite as isolated or maybe just a few local friends.
(09:57):
So part of what we’re going to do is open up that community. I think Facebook might be the first place, but we might also have a discord community for those of you that are a little younger for the siblings, the brothers, and all that kind of stuff. We will try to cite sources of information that are data supported. One of the sources I’d like to cite right now for you, it’s an article that’s a very easy read. It came out in the Washington Post in November 18th of last year, so November 18th, 2023. It was written by a gal that I think did an amazing job at collecting a lot of data. Her name was Catherine Ellison, and the title of the article Rift Over Profound Autism. It has a tremendous amount of, I think, relevant data and best practices, updates and all that kind of stuff. The last thing I wanted to leave you with is there was a podcast I listened to from January of this year, so January 21st, 2024.
(10:58):
It was a Speak Now podcast, which is the Autism Science Foundation. And Dr. Y Ru Chen, who’s at the Boston University was talking about some of the research she’s done regarding language and communications. We know for our own son. I think probably for many of you that have a nonverbal or slightly verbal individual just understanding how they’re feeling. Are you sick today? Or what do you really want to do? That can be a huge problem. And we know it creates frustration on both sides of the fence for your son or daughter, for our son for sure, and for us too. We don’t know what to do. It also talks a little bit about the rift between the parents of profoundly autistic folks and the parents of what I would call higher functioning autistic individuals or individuals that don’t require the same degree of support. We don’t want to take any political sides here.
(11:52):
We will cater and have on over time technology and jobs and discussions for the full spectrum. But we definitely are going to focus more on the profoundly autistic, partially because that’s our own selfish interest. That’s where our son’s at, and partially because that’s the community that’s probably had the greatest problems, the greatest challenges in getting the kinds of supports they need because they cost a lot of money and they take a lot of effort when you require one-on-one care for your son or daughter from the time they wake up to the time they go to bed, because they might express pica behavior, which is where they’ll eat anything they see like our son does. So he is walking down the street and he picks up a rock and sticks in his mouth or picks a leaf and puts in his mouth. So it’s that kind of stuff that we want to be sure and talk a lot more about.
(12:45):
Not that we’ll exclude the other side, but we’re not going to get into a debate about who’s right and who’s wrong here. We just think there’s such a need and we hope you guys will participate and help us understand what your concerns are. So just to close the journey that we want to put you on and help you with and let you help us with is to make anyone who has a profoundly autistic individual, that person’s life, more upbeat, more joyous, more positive, more optimistic with a future that bodes well of possibilities because of tech, because of new medical breakthroughs and because there’s this huge increase in this population, there’s not enough money in this entire country to take care of those folks unless we figure out a way to make them employable, give them jobs that they enjoy, put them in communities that are fun and vibrant and exciting, get other folks involved that maybe are naive or don’t really understand profound autism versus the other things.
(13:52):
At the end of the day, this journey is going to be upbeat. I promise you. We’re going to try to deliver things that brighten your day a little bit, especially when you’ve had a tough time and the school’s called and said You’re 21-year-old who’s not yet aged out of our transition program at 22 is just acting up to date and we can’t have ’em here anymore. We want to help you address those kinds of situations, talk to others who’ve gone through that, discuss strategies for avoiding that or mitigating that in the future. And with all of us working together, we really think we can add a little joy, a little brightness, and a little fun to this journey. So until next time, keep those spirits up and hope you have a great day and a great week. See you.
