Explore rising autism rates, the challenges of profound autism, and why families urgently need better lifelong care and support systems.
Key Points:
Autism rates are soaring
Diagnoses rose from 1 in 36 (2020) to 1 in 31 (2022); in 1990, it was 1 in 10,000.
Profound autism needs more attention
Up to 30% face severe challenges requiring 24/7, lifelong care.
Families face a care and funding cliff
Support drops after age 22, with systems underfunded and overwhelmed.
The Reality of Profound Autism: A Father’s Perspective
I recently talked on my podcast about something that’s been weighing on me more than ever: the skyrocketing rise in autism diagnoses. The numbers are staggering. According to the CDC, autism rates jumped from 1 in 36 children in 2020 to 1 in 31 just two years later. When my son was diagnosed back in 1990, that number was 1 in 10,000. Let that sink in.
I know this might be controversial, but I stand by what RFK Jr. said — that autism is “a more urgent pandemic than even Covid.” I realize that statement ruffles feathers, but as someone who’s been living the reality of caring for a child with profound autism for over three decades, I get it. This isn’t theoretical for me. It’s personal.
Living With Profound Autism: Our Daily Struggles
Profound autism isn’t what people usually picture when they think of autism — it’s not the quirky genius from a TV show. Roughly 25 to 30% of those diagnosed fall into the category of profound autism, and the challenges are immense.
My son struggles with communication. Some days are better than others, but verbal expression is still very limited. His cognitive challenges mean he needs support for even basic everyday tasks. And there are behavioral issues that break your heart — moments of self-injury, sudden aggression, meltdowns that drain every ounce of energy from the entire household.
When he was diagnosed, autism was barely understood. Now, as an adult, he receives 24/7 care through a Medicaid waiver program. And let me tell you, getting that support was like running a bureaucratic marathon. Navigating the system is a full-time job on its own.
The Financial Cliff That Keeps Me Up at Night
What terrifies me the most — and I know I’m not alone — is the money. I don’t sugar-coat it: caring for someone with profound autism can cost millions over a lifetime. And once our kids turn 22? That school-supported safety net vanishes. It’s like falling off a cliff. That’s exactly how I described it, and I meant it.
With more children being diagnosed every year, our systems are under intense pressure. Funding is already stretched, and many families are going under — paying out-of-pocket or giving up careers just to be there full-time for their kids.
Transcript
Mike Carr (00:05):
Well, this week I have to talk about something that’s been in the press recently when it comes to autism, and that’s RFK Junior’s statements about autism as well as the c’s, updated statistics. So let’s talk about the statistics. And I also want to talk about one thing that’s just hugely important that RFK Junior has gotten right. And I know there’s a lot of controversy around a lot of what he said, and he’s pissed off a lot of folks in the autism space. But this one statement is really worth thinking about. So what’s the stat? The stat was back in 2020, the incidence rate of autism was one in 36 amongst 8-year-old children. That was how many 8-year-old children being diagnosed or how many 8-year-old children would have autism? And two years later, just two years later, 2022, the CDC, that’s dropped to one in 31.
(01:02):
Huge increase, right? Going from one in 36 to one in 31 in just two years. Big deal. So RFK has said a lot of things. RFK Junior said a lot of things. But the one thing that he said, which I think is worth thinking about, and it has incredible implications, and there’s also an insight to be gained, is autism is a more severe, a more urgent pandemic than even Covid. And that’s not exactly what he said, but I think it’s the gist of it, and that’s put a lot of people off. But I think it’s worth thinking about. Our son was born December 28th, 1989, and he was diagnosed a year later. Well, he wasn’t diagnosed, but we had him. We had a lot of specialists look at him a year later. So in 1990, the incidence rate of autism was one in 10,000, one in 10,000.
(01:58):
Now since then, it’s obviously increased exponentially. And a lot of people attribute, or some people attribute a great part of that increase to improved diagnoses, right? Well, now they understand what autism is, they understand how to check for it, how to diagnose it earlier. They’re including other types of things that maybe weren’t back in 1990, considered autism like Asperger’s, higher functioning folks that can be more mainstreamed and maybe are savants or brilliance in certain areas, but have other challenges when it comes to social. And certainly part of the increase, I would agree, can be attributed to a better diagnosis or a broader diagnosis. But one of the points that I think RFK Junior makes and that we certainly would agree with is it’s not just diagnosis. That it actually is truly increasing at a scary rate. And I can remember when our son was 2, 3, 4 years old and we were going to doctor’s offices and no one had ever seen anyone with autism, and most educators hadn’t either.
(03:06):
And so we’d take him to schools and say he’s autistic, and they really didn’t understand what that was. And so they’d stick him in a class with other people with variety of other challenges. But it was such a new beast because there were so few kiddos. This is in Dallas-Fort Worth. This is a major metropolitan area, even back in 1990. And we took him to the leading metabolic specialist in the metroplex, the autism expert who looked at him and tested him for a couple hours and flat said, he does not have autism. He was wrong. Today, if you look at the checklist, our son would’ve checked just about every box when he was two years old or three years old in terms of autistic tendencies and what you look for. But it was such a rare bird. So one of the things that’s so compelling and so interesting to think about is if it is increasing exponentially, why is it increasing?
(04:04):
And what do we all need to do to further that diagnosis or that solution to autism if there is such a solution or understanding of what’s causing the problem? Now, RFK JR put out a very ambitious goal of sometime this fall. They would hopefully have that answer. I don’t think that’s going to happen. I don’t think most researchers think that’s going to happen. But one of the things that I think is hugely important and something that will make a difference is clear communication, informed communication. And here are a couple examples about one fourth, maybe a little bit more. But let’s say one fourth of those that are diagnosed with autism are severely autistic like our son, and they’re much lower functioning nonverbal or limited verbal IQs typically have 50 or less, certainly 70 or less behavior problems, maybe fine most of the time. But then all of a sudden they run off the rails and they’ll bite somebody or they’ll throw a fist at somebody, they’ll bang their head against the wall.
(05:16):
That percentage is a big deal because they’re extremely expensive to care for. Our son qualifies for an HCS waiver. So he gets one-on-one care from the time he wakes up the time he goes to bed seven days a week, 365 days a year. That costs a lot of money. And we’re fortunate enough that Medicaid picks up a lot of that and then we can pick up some too. And there are other kiddos like our son who qualify for even higher levels of care. So if you look at the lifetime of what that investment, what the taxpayer is have to pay, what we all are going to have to pay, it’s millions of dollars for every person like that. And when you look at this exponential growth, one in 10,000 in 1990 to one in 30, one in 2022, so it’s probably even higher today. And a fourth to 30% of those are severely or profoundly autistic.
(06:26):
And there’s not going to be a cure, right? Once the brain’s developed, I think the best practices, all the research shows, that’s just the way they’re going to be. You might be able to mitigate some problems with technology. You might be able to improve communications, and there’s that communications word again, but you’re never going to cure their autism. And so when we talk about communications, it’s not just clearly understanding that autism is not the same for everybody that there are, it’s on a spectrum, right? There are many shades of autism, and those at the lowest end are the ones that require the most empathy, the greatest degree of support. And that number is exploding. So in spite of some of the misstatements perhaps that RFK Junior made and the misinformation that he communicated, that portion of the population is aging out of the school system at 22, and it’s like dropping off a cliff, right?
(07:26):
The parents don’t know what to do, and it is a huge problem, and it’s going to cost more money than the federal government has the states have with the current procedures, processes, solutions in place. So what we’re trying to do through autism labs and through our boots on the ground nonprofit, J 13, is take technology, both AI technology and other types of technology wearables, and couple that with some of the best trained skilled practitioners and therapists, so we can provide a better outcome for those that are severely autistic, that have multiple IDDs at a lower cost. And we’ve only been doing this for a year or two, but we think we’re onto something. We think we actually have a process that’s working and we’re going to start collecting more and more data and hopefully come back to you a year from now with some hard science and some hard numbers to show that we have something that really is scalable and it’s going to work. So that’s it for today. Thank you for joining us. We’ll get back next week or next time with some more, I think, practical tips, but I had to speak to RFAK Junior’s comments. I do think autism is arguably a bigger deal than covid because it’s not cured and the increase is exponential, and it’s not going down. It’s only going up. But if we communicate clearly and if we communicate with an informed viewpoint, it’s just going to help everybody. Have a great week. Talk to you again soon. Bye.
