This is the Turn Autism Around podcast, episode 333. I’m your host, Doctor Mary Barbera, and I usually don’t announce the episode number, but with such a cool number at the start of 2026, I just had to give the number a shout out. So, wherever you’re watching or listening to this episode, I appreciate you. I would love it if you would subscribe to my YouTube channel, subscribe on Apple Podcasts, Spotify, wherever you’re listening, and help me spread the word by sharing this and commenting to help me get the word out across the world.
Today we are diving deep into level 3 autism, which is the most severe level of autism, and we are talking about what level 3 autism is and covering the steps you can take today to hopefully lessen the severity level. When many parents hear “level 3 autism,” they feel very fearful, and I want to cut through that fear today and really talk about the common symptoms and the levels—there are three levels—the treatment options, and whether these levels can change. They definitely can change. We’re going to talk about the actual steps you can take towards the end of this episode to hopefully lessen the severity. So, listen and watch till the end and I’ll bring you some clarity and hope and give you those action steps.
As many of you know, I have two sons: Lucas and Spencer. Lucas is my oldest son. He will be 30 years old soon, and he has moderate-to-severe autism. Spencer is just 18 months younger than Lucas, and Spencer is a physician. He was kept in gifted programs in school and never showed signs of autism. But I mostly talk about Lucas, and we’re going to talk about my journey in getting Lucas diagnosed.
Way back in 1999, Lucas started showing signs right around the time Spencer was born. So, Lucas was around 18 to 20 months. My husband started to get worried, and Lucas was eventually diagnosed the day before he was three, in 1999, with moderate-to-severe autism. He was diagnosed initially by a developmental pediatrician named Doctor James Copeland, who did a podcast episode with me many years ago when we first started, around 2019 or 2020. We can link that in the show notes because it is a really good episode.
So, Doctor Copeland, my husband, and I thought that Lucas was going to get diagnosed with autism, but he had just completed a whole year of typical preschool. So even in my husband’s mind—and definitely in my mind—we thought that Lucas was going to be diagnosed with a very mild case of autism. When Doctor James Copeland said that it was moderate-to-severe autism, we were freaking out a bit. I was crying. I tell this story many times in different avenues, in my two books and in my videos. In addition to having that diagnosis the day before he turned three, I also put in a request to get an evaluation by a psychologist who would actually do more developmental testing, because we were starting ABA therapy and I just wanted to have more of those scores documented at baseline to see if we were making gains and how much gain we were making.
So, Doctor Copeland was on top of things, as was the psychologist who did more psychological testing, I think about two months later. The psychologist, in her report, diagnosed Lucas with what was then known as PDD-NOS, pervasive developmental disorder–not otherwise specified. Remember, this was many years ago and they were using the DSM-IV to diagnose. PDD-NOS was considered a very mild type of autism. So, in July we got a diagnosis of moderate-to-severe autism, and in September we got a diagnosis of PDD-NOS—and the reports didn’t exactly line up.
Luckily for us, we did have a meeting, and I had Doctor Copeland and the psychologist in the room to discuss, and my husband was there. I believe Lucas was there; I’m not sure. I had them both in the same room and I was asking them, “Well, which is it? Is it mild or is it severe?” Doctor Copeland was very wise—and we talk about this in his podcast—but he said it really depends on the day. It depends on the type of testing. For the psychologist, for instance, she had more of a structured testing setup, which I talk about in some of my videos. She would set up a doll and a plate and those kinds of things, and she would be looking for pretend play.
I remember that day when it was tested. I think it was even noted in her report. We had bought Lucas a soft pretzel, and I had that in my hand while she was testing him. During the test, he came over, ripped off a piece of the soft pretzel, and put it on the plate for the doll. That gesture, which I thought was unusual for Lucas because he really didn’t have pretend play at that point—it’s not like he was feeding the doll the pretzel or anything elaborate—but that gesture of just pulling the piece off and putting it on the plate scored Lucas some points. That, for instance, was one of the factors that led to the diagnosis of PDD-NOS versus moderate-to-severe autism.
But, in addition to saying it depends on the day, Doctor Copeland also noted that it depends on how much sleep he got and what else is going on. I remember that with the psychologist, Lucas was also turning the lights on and off and doing some things that weren’t appropriate. They both knew that he had successfully completed a toddler preschool year without an aide or anything. So he did “look pretty good” on some levels. He wasn’t having any aggression or self-injurious behavior. He wasn’t flopping on the ground. He was pretty mild-mannered.
But I pressed on: “Is it mild or is it severe?” And Doctor Copeland said the severity of autism was like saying something is light red or dark pink. The real question, he said—the question that I really wanted answered—was how Lucas was going to do at age 8 or 18, and neither of them could answer that. No one had a crystal ball. At this point, in his opinion, Lucas had moderate-to-severe autism, and he recommended an intensive applied behavior analysis program, which we had already started and had in the works.
Remember, this was 1999, way before there were three levels of autism categorized in the DSM-5, which came out in 2013, more than a decade later. So today, we’re diving into the levels of autism, especially level 3, which in my experience is what most toddlers get diagnosed with most of the time. That tends to freak people out, because no matter how they look—if they’re making gains, if they have some language—if it’s documented that they have symptoms of autism at 18 months or 2 or 2½ and you can get an appointment without these huge waiting lists (which are still a major problem), then they are probably going to diagnose that type of young child with level 3 autism.
According to a 2023 analysis of U.S. data on eight-year-olds on the autism spectrum, about 27%, or roughly a third of them, were classified as having profound autism. The “profound autism” label is often used to approximate or overlap with level 3 severe autism, so that makes it extra complicated. So, about a third of eight-year-olds have a diagnosis of this more severe type of autism. One could think that, out of two-year-olds, we’re going to have a third of them having severe autism as well. But I would say, like I said before, that the majority of early-diagnosis cases are not just picked up in kids with very high levels of language and low repetitive interests and those sorts of things.
We don’t have good data to show exactly what I’m saying, which is that most little kids will get a diagnosis of level 3 autism if they’re brought in really early. That’s part of why we don’t have the data. But what we do know is that the levels can very much change. Many studies group ASD very broadly without always specifying the DSM-5 severity level. But I know from case studies—from people in my online course, for instance—like Michele’s daughter, Elena, whom we’ve featured in a few different podcasts. Even my mentor, Doctor Rick Kubina, and I wrote up a white paper (which we’ll put in the show notes, or you can get at marybarbera.com/whitepaper) on Elena’s progress.
She went from, during COVID when diagnosis and testing were hard to complete, having very significant problem behaviors—self-injurious behavior, scratching herself, and only a few words per hour—to hundreds of words and phrases and no self-injurious behavior in the matter of a few months. When she was finally brought in for that breakdown of levels, she was given the diagnosis of level 1 autism. But had she had that test a few months earlier, when she was initially diagnosed with all the symptoms she was having, she would have been diagnosed at the severe end. That changed within a matter of months. So, especially with little kids, levels can definitely change with therapy and intervention.
All right, let’s talk about what level 3 autism really is. The DSM-5 levels describe support needs, not intelligence or language. Level 3 means “very substantial support required,” based on two areas: social communication challenges and restricted, repetitive behaviors. So, if you have a child who is talking a lot, almost conversational, and has mild restrictive, repetitive behaviors, they are probably going to get a level 1 diagnosis. But if you have a child who’s not talking at all or is minimally verbal and also has problem behaviors around things like not wanting to brush their teeth, tantrums when they have to wait their turn, or tantrums going to the doctor, then the combination of social communication challenges and restricted, repetitive behaviors is what we are looking at.
Level 3 means you need significant help. Level 2 means you need moderate assistance, and level 1 requires minimal assistance. So it’s a description of the current functioning, not a prediction of future ability. I really do want to stress that: when parents get a diagnosis of level 3 autism, that’s what their child’s symptoms are showing right now, today. Now, in some cases—maybe in many cases—children continue to have significant needs. For example, my son still has moderate-to-severe autism, and he also has an additional diagnosis of an intellectual disability, which is defined as an IQ under 70, and IQ scores are not considered stable until at least age 8.
I’m seeing, over and over again, parents saying, “My two-year-old has a level 3 diagnosis, and I have to prepare for a future that looks like your future with Lucas—or worse.” That is not what I would recommend. You go with your child’s strengths, their needs, their current symptoms, and then you help them to get more independent, reduce problem behaviors, improve language, improve picky eating—all the things to move them forward, whatever that looks like.
Some common symptoms or traits that make up level 3 include limited or no spoken words. So, if you are not speaking but you point well, gesture, respond to your name, share, and show things, that all gets combined in the evaluation. Some kids can have a pragmatic language problem, or they can have an expressive language problem, or they can have selective mutism. I did an episode on the podcast with an expert on selective mutism. It’s a combination of not just your spoken words and language, but also your joint attention and your receptive abilities. For level 3, we’re usually looking at limited to no spoken language or minimal speech, difficulty with pointing and gesturing, difficulty responding to their name, and using behaviors to communicate.
These children might have more tantrums than typical, more sensory issues, and they tend to be rigid about routines, about colors and clothing textures, and about food. They might have self-injurious behavior, aggression, property destruction, or eloping. For Lucas, when he was little, he didn’t have self-injury. He didn’t have aggression, ever. He would have property destruction just because he would get a marker and scribble on things. He was more immature with his exploration of toys and didn’t understand rules like “you don’t write on walls.” Eloping was a problem for Lucas. He was very “dart-y” when he was little and got lost a few times. He didn’t understand the rules about staying with us or not leaving the house or yard.
Kids with more severe, level 3 autism tend to have more repetitive movements or vocalizations. Their daily living skills can be delayed with eating, tolerating textures, using utensils. They can have problems with sleeping and a lot of problems with potty training. In both of my books, I have chapters on potty training, and I have potty training bonus videos within my online course and community. They also often have problems with hygiene, dressing, grooming, and tolerating things like toothbrushing and handwashing, and self-care tasks like dressing and pulling their pants up and down for toileting.
Kids with level 3 often need significant hands-on support across routines in the community, at school, and at home. They likely need almost constant supervision. Kids in general—and this was really highlighted to me during COVID—need to be engaged during most of their waking hours. Young kids, and kids with autism especially, have very few leisure skills or waiting skills or things to keep them busy and safe. All kids need to be engaged during most of their waking hours, which is about 100 hours a week. So even if you have a child—or you’re a professional working with clients—who gets 20, 30, or 40 hours a week of ABA treatment or attends a special-needs school, even if you fill 40 hours a week (which is huge and a lot), that still leaves about 60 hours where the child is not asleep and will need supervision, engagement, and fun activities. It’s just a lot.
Treatment options include ABA, speech therapy, and OT, building that receptive and expressive language foundation we need to support learning, imitation, turn-taking, and early requesting. Occupational therapy is sometimes involved as well for sensory regulation. I have a whole chapter about picky eating in my Turn Autism Around book—I think it’s chapter 9—and I take a very behavioral and positive behavioral approach to feeding. There are lots of experts with different ways to treat feeding challenges. And we need to focus on developing leisure activities and independent skills.
That’s why, with my four-step, proven, child-friendly approach, we take a very holistic look at the child’s strengths and needs, and then we help teach communication, imitation, play, self-care, and cooperation while reducing all the problem behaviors that get in the way of learning. My big thing is: if we can empower and teach at least one of the parents how to be what I call “the captain of the ship,” I think we’ll see more progress with kids with severe, level 3 autism—helping their language and self-care go up while problem behaviors go down.
I do think that even with great therapists in place, progress is going to be slower without parent involvement. Parents are with the child the most, during daily routines and during those dozens of waking hours when no professional is there guiding them. If parents know exactly what to do to accelerate communication, reduce tantrums, and build skills faster, it really helps the whole situation. Parents in my online courses add on top of whatever is in place with school and therapy, and we make sure that every therapy and every therapist is on the same page so that we can really be moving the child forward in the most positive, efficient way possible.
So, where do we start? What I would recommend after a level 3 diagnosis—or even after a level 1 or level 2 diagnosis, regardless of age—is a few tips you can implement right now, whether you’re a parent or a professional. Parents will need to be involved with this first step. It is called the Barbera Early Childhood Assessment, or the BECA (BECA-BSA). It is my 10-minute free assessment. It is based on decades of my work and on page 49 of my Turn Autism Around book, which is the Turn Autism Around assessment. In 2022, I took page 49 of my book and all the work I’ve done over the decades for this assessment and we turned it into a software system so you can get a clear picture of your child’s strengths, needs, and problem behaviors—and where they are with picky eating, sleeping, potty training, grooming, and dressing.
That’s all in the self-care/adaptive skills category. We also have a category within the BECA for language and learning skills, as well as a third category for problem behaviors. The BECA gives you a strong, clear starting point and priorities. Then I would really recommend—and I know this is a free video and I have thousands of free videos and podcasts—that you consider joining our online course and community, where you can get step-by-step support. You can get step-by-step videos, and you can also get a community of support with our Facebook advisors. You can get “unstuck” calls. This is really complicated, and we break it down and teach you in a very specific way and give you that community support because you are going to get stuck.
It is going to be a little different for your child versus another child. For example, say your child is two, and the recommendation or video in the course is for a four-year-old—you might need a little bit of adaptation. Or your child might have some kind of physical limitation and can’t sit a certain way. We can help you through our online community. I’ve invested a significant amount of money to learn how to present webinars, do a podcast, and create online courses. I’ve also invested money to learn how to play the piano with an online course, or learn how to lose weight, and those sorts of things.
The question is: can you learn to play the piano for free, by piecing together YouTube videos? I guess technically, yes. And now with ChatGPT, maybe you can. But very, very few people will actually learn to play the piano unless they’re given step-by-step instructions and places to ask questions so that when they get stuck—which they invariably will—they can move forward. And I think a lot of people, parents and professionals, are staying in what I call the “sea of free” information and trying to piece together random tips and tricks. This is serious. Level 3 autism—or any level of autism, level 1 or level 2—requires that you make sure you’re doing the right things in the right order so that your child can be as independent as possible, as safe as possible, and as happy as possible.
That’s our goal for every child. It’s my goal whether they have autism or not. Safe, independent, and as happy as possible is my goal for both my sons. One is a physician, one has moderate-to-severe autism. We need to really move forward in a systematic way so that we are making progress.
So, here again are the things you can do. You can do the BECA for free at marybarbera.com/assessment. It’ll take you about ten minutes to complete. Then I would urge you to watch the free webinar and consider joining our online course and community. You can also read my book Turn Autism Around or get the free eBook resources and read chapter one for free. We can link that in the show notes as well. We just need to move forward. And in 2026, I really think this is your year—whether you have an 18-month-old just showing signs, a two-year-old, four-year-old, eight-year-old, or ten-year-old. If they are not making as much progress as you had hoped, there probably are additional things you can do.
Finally, can children move from level 3 to level 2 or level 1 over time, or can they lose their diagnosis? There are studies—which I discuss in chapter one of my Turn Autism Around book—that show that between 4 and 13% of kids can actually lose their diagnosis or “recover” from autism. There is an additional study done in 2023; I did a podcast on it, and we can link it in the show notes. That podcast episode is called, I think, “Can You Outgrow Autism?” This 2023 study was done in Boston and looked at over 200 kids who were diagnosed with autism between the ages of one and three, and then looked at them again between the ages of five and seven. Thirty-seven percent of them no longer qualified for a diagnosis of autism.
Changes occur in terms of levels when early communication improves—not just talking, but understanding directions, language comprehension, pointing, showing, and sharing. Levels can change as problem behaviors reduce and you get rid of tantrums, aggression, and self-injury. Whether the levels change or not, getting those major problem behaviors at or near zero should be the goal for every parent and professional out there. Levels can also change as we focus on self-care and adaptive skills, such as getting kids to dress themselves, shower, potty train, improve their food selection, and improve their sleep.
Progress depends more on intervention and parent involvement than on whatever level you get at the initial diagnosis. We can make a difference for level 3 or level 2 or level 1 as well. Level 3 autism is not a death sentence. It’s not unchangeable. Kids with level 3 autism can learn, grow, and make major progress. I would encourage all parents out there, as well as the professionals who support them, to take the BECA assessment, learn the early strategies through my online course, and use therapy plus home routines together for the best outcomes.
I hope you enjoyed this episode. If you did, I would love it if you would share it with others, and I will see you here next time.
