Autism Labs

Why I’m Optimistic About My Severely Autistic Child’s Future

• Autism Labs Community • Season 5 • Episode 1

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In this episode, Mike Carr shares why he remains optimistic about the future for his severely autistic son despite the many challenges parents face, including the loss of school-based supports after age 21, difficulty accessing adult services, navigating benefits like SSI and special needs trusts, establishing legal guardianship, and planning for long-term care. He highlights reasons for hope: greater awareness of severe autism, stronger parent-led advocacy through organizations like the NCSA and Profound Autism Alliance, advancing research that identifies distinct types of autism, emerging care alternatives such as pairing severely autistic individuals with higher-functioning “buddies,” and technology-driven solutions including AI and wearable devices that monitor biometrics and behavior to prevent crises. While raising a profoundly autistic child is undeniably demanding, these developments provide practical pathways for safer, more stable, and fulfilling lives, showing that the future can be shaped by progress, innovation, and informed planning rather than fear.


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Mike Carr (00:05):

Why I'm so optimistic about my severely autistic child's future? Now, you might be think, how can any parent be optimistic about their child's future if they have severe autism, profound autism? And I get it. The challenges can feel almost backbreaking. So here are five of the fears that I hear most often from parents. Fears that you may recognize immediately. So fear number one, falling off the services cliff when my child ages out of school, at 21 or 22 years old, this could be a big deal. That built-in routine the school offers, the one-on-one support that's available throughout the day. The therapies that might include OT, occupational therapy, PT physical therapy, ST speech therapy, and even in some cases RT, which is recreational therapy, all vanish when you're a kid, oh, age is out of school. Number two, accessing adult services. How do you access adult services when they get out of school?

(00:55):

You may qualify, but nothing's available. You're on the HCS or the class list for a Medicaid waiver, but the waiting list are long. Here in Texas, over 15 years. And these services are expensive. They're not always covered by insurance and they may be needed for a lifetime. Fear number three. Not knowing what benefits are even available or how to get them. Like what's SSI? What's SSDI? How are they different? How do I get it? What's an ABLE account? How do I set one up? Should I set up a special needs trust? And who do I need to help me do that? And then circling back to those waivers and those long waiting lists. Could I maybe get in early? Can I maybe get moved to the top of the list? If I get a diversion slot or an emergency pathway? We did. After being on the list for 14 years, we finally got a diversion slot.

(01:42):

Fear number four. Legal authority. Once your kiddo turns 18. Now let's say your child is nonverbal like our son, has a low IQ or has other medical conditions. Do you need to go to court to establish legal guardianship? We did. And if so, how do you do it? And then the biggest question of all, number five, which you may not be worried about yet, but we certainly are with a 36-year-old, is who is going to take care of my child when I'm no longer able to? And what residential options exist for a profoundly autistic adult who requires one-on-one care their entire life? There may not be a program in your community that offers the high staffing ratios your child requires, like Michael gets one-on-one care. From the time he wakes up, the time he goes to bed every day. And the options that are out there might be prohibitively expensive.

(02:28):

So some of these or all these might sound familiar and you probably have a few that I haven't included. So how can I possibly be optimistic for my own severely autistic child's future or for your child's? Well, here are five reasons, five more reasons to be optimistic. Let's get off the fear table. Let's talk about the positive stuff. Number one, there are more severely autistic kids than ever before. So when our son was little, very few doctors, medical professionals, had they ever even seen anybody that was severely autistic. They hadn't seen them. They weren't around. Today, that's no longer the case. There are many more little ones like our son, which means something really important for you. There's greater awareness, there's more attention, and there's more momentum to solve the problems. Now, I agree. Some of the current conversations are a bit misguided that we see in the press these days.

(03:14):

But I think here's what matters most. Autism is out of the closet. It is being discussed openly, and everyone today has heard about autism. And while many people have only maybe met someone with autism who's higher functioning and maybe requires less support, there really is a growing, I think, acknowledgement that severe autism requires a whole different level of care, resources, and attention. So awareness is the first step. And my friends, we are finally getting there. Number two, advocacy is getting better. Now, two of the organizations, I know there are a bunch, but the two organizations that I follow that I'm super impressed with, at least their founders, is the NSCSA, the National Council on Severe Autism and the Profound Autism Alliance. Jill Escher, who leads the NCSA, is a tireless champion of the cause, and she's doing it as a parent of two severely autistic children.

(04:05):

And you can find out more about them at ncsautism.org. The other organization was founded by Judith Ursitti, and she has a son who's also profoundly autistic, and she's also been leading the charge as the president of the Profounding Autism Alliance. So it's profoundautism.org if you want to find out more information about what they're up to. And I think both of these are hugely important. For years, many families have felt invisible, and that's finally changing. With folks like Judith and Jill out there, real advocacy is happening. They're relentless, they're informed, and they're making a difference. Number three, for optimism. The science and research, believe it or not, is actually getting better. Now, there have been some recent missteps. Tylenol is the cause of autism. I don't think so. But in spite of this misdirection, there is still something to take heart in. And there's an example of this that came out in the Washington Post just a couple weeks ago on December 26.

(04:59):

The article was titled New Science Points to Four Distinct Types of Autism. And it included some research by several very credible scientists, including Natalie Sauerwald who's a computational biologist at the Flatiron Institute. And her study and her colleague's study was published back in July in Nature Genetics, but it's pretty cool. And there's a lot of insights. So I encourage you to take a look at this study. And again, that Washington Post article from December the 26th of 2025 might be a good starting point for you. And that article, again, was titled New Science Points to Four Distinct Types of Autism. But one of their findings was the smallest group of autistic individuals, which our son falls into, is about 10% of at least the participants in their study. And they're the ones that face the steepest challenges. They are marked by development delays. Yeah, Michael's got that.

(05:48):

Difficulties with communication, yep, Michael's nonverbal, difficulties in social interaction for sure, and repetitive behaviors that touch nearly every part of their life. And Natalie labeled this group broadly affected. So I think anyone that's got a severely autistic son or daughter, profoundly autistic, level three autistic would all agree autism broadly affects their life. And I think that's cool, right? The kind of research matters because better categories can lead to better understanding and better understanding, can lead to better supports, better therapies and better outcomes. So thank goodness for Natalie and her colleagues for this study. Number four, there are some real alternatives coming up to one-on-one care. And I've mentioned already, Michael needs one-on-one care. Someone to keep an eye on them or when they've left for the day, we might put a camera on them, but we got to pay attention to what he's doing. But we've discovered something that's pretty darn exciting.

(06:40):

When we pair Michael with a buddy of his, who's also autistic, but higher functioning, something almost brotherly can happen. His buddy can sometimes, I would say often, get him to do things his professional colleagues can't. And in the future, that buddy may even be able to get paid to do this, freeing a more trained, neurotypical colleague to oversee both of them. And that could reduce total cost, it can improve efficiencies, and it could certainly improve outcomes. And so if you're a parent who's been told in hundreds of different ways, your only option is one-on-one forever, and you can understand why this idea feels like a door cracking open just a little bit. And the number five, the fifth reason to be optimistic is technology can help everyone. Now, AI has been hyped to death. The first few versions were questionable in terms of how they could possibly help anybody like our son or perhaps your son or daughter.

(07:32):

But as AI matures and as the hardware becomes more capable and less expensive, I'm becoming increasingly excited about a multimodal solution. So what's a multimodal solution, which I can barely say. Well, think about a wearable like a watch for tracking biometrics. Also coupled with an always on camera and microphone. So here's how it might work, right? The biometrics could track heart rate, track breathing and maybe perspiration in real time. And the colleague gets an alert if it looks like Michael's becoming agitated. Even before, maybe he looks like he's becoming agitated. All of a sudden his heart rate's up or he starts to perspire or he's breathing shallow. Well, the device can sense that and it sends an alert to Ellen's phone and whomever's watching him that, "Hey, something looks like it might be happening with Michael." Take a look at him, have him sit down, have him disengage from the loud noise or whatever's setting him off before aggressive behavior occurs or seizure occurs or whatever it is.

(08:26):

And then over the course of days or weeks, you start collecting all this data, even when he doesn't have a seizure or an event and you couple that biometric data along with the video and the audio and you can start getting a really fascinating picture that could answer questions like what was going on right before Michael maybe had a meltdown or a seizure. What was he seeing? What was he hearing? Or what happened during his meltdown? How did the team intervene? How much disruption was creative? What did the post-event activity look like? Or what was learned and what needs to change to improve to handle the event better the next time? So with the help of AI, if we can spot patterns earlier, if we can intervene sooner and if we can learn faster, I think we can reduce the frequency and the intensity of these crises.

(09:16):

And this is not just hope, it's a practical pathway into a safer, into a more stable life. So my conclusion is raising a severely or profoundly autistic child is probably the hardest thing you're ever going to do as a parent. It certainly has been extremely challenging for us. It can test your strength, it can test your marriage, it can test your finances, it can test your faith and your endurance in ways that no one truly understands unless you've lived it, right? But I believe there's a light at the end of the tunnel. And more importantly, I think that light is slowly getting brighter, right? Awareness is rising. Advocacy is getting sharper. Research is getting more precise. New care models are emerging and technology is beginning to give us tools we simply didn't have before. So that's why this year, that's why in 2026, this podcast, Autism Labs podcast, we're going to start including more episodes on the positive developments, the best new therapies, medications, technology, and how others like you, how parents, how clinics around the country, even some folks outside the US are leveraging all this to provide improved care so that you guys and parents everywhere can have more reasons to breathe, more reasons to plan and more reasons to hope because the future of our kids doesn't have to be defined only by fear.

(10:36):

It can also be shaped step by step by step, by progress. And that's what we're going to help you see for your child. So stay tuned for the next episode. And I hope you have in the meantime a hope-filled positive week. See ya.