Life on the spectrum with Mason
By Victoria Robinson, as told to Andrea Kane, CNN | Photographs by Brenda Bazán for CNN
(CNN) — One in 31: That’s the estimated number of children identified as having autism spectrum disorder by age 8 in the United Sates, according to the most recent data from the US Centers for Disease Control and Prevention.
That number has been going up for decades. It was around 1 in 150 in 2000, and it was thought to be fewer than 5 per 10,000 children in the early 1980s.
According to experts, three main reasons account for the lion’s share of the growth over the years: increased awareness, improved screening tools and the expansion of the diagnostic criteria to include a much wider range of people.
There are two main components of autism spectrum disorder, Dr. Matthew Lerner told CNN Chief Medical Correspondent Dr. Sanjay Gupta recently on his podcast “Chasing Life.” Lerner is director of the Social Connections and Treatment Lab at the A.J. Drexel Autism Institute.
“Autism spectrum disorder in the current DSM [the Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association] has sort of two groups of criteria,” he said. “One is in the social and communication domain: Difficulties with fluid back and forth social interaction, reading and using nonverbal cues, making and maintaining friendships and relationships.
“Another domain has to do with restricted, repetitive behaviors and sensory experiences,” he explained. “So maybe needing to say the same thing over and over again, or needing to line up toys in a very particular way … hand flapping or kind of pacing back and forth, as well as having maybe a lot of reactivity to certain kinds of sensory experiences like loud noises, itchy shirts, things like that.”
People who are on the spectrum have defining symptoms that appear in different ways and to different degrees. Some may be non-speaking while others might speak very fluidly. Some may complete high school, college or even graduate school, while others may never learn the alphabet. Some may get married and have children while others will always require a caretaker.
“If you’ve met one person with autism, you’ve met one person with autism” is an often-repeated quote attributed to Dr. Stephen Shore, an autistic professor of special education at Adelphi University, author and autism advocate.
Through the photos and text below, we’ll introduce you to one autistic person and his family. Mason is 14 and lives in Texas with his mother, Victoria, father Brandon and brothers Everett, 7, and Preston, 3. Victoria shares their story, and her comments have been edited for length and clarity.
A ‘big pivotal moment’
Mason was Victoria’s first child, so everything about parenting was new to her. She describes him as a happy, healthy boy. But in those first years, she noticed a few things.
He was always really serious. And he would line up all his toys. And then sometimes he would be so obsessed with one certain toy, and if it was missing, he (would have) a hard time. There were little things like that.
He always liked to play by himself. That was one of the things that stuck out to me. Kids would come and talk to him, and he would kind of talk to them a little bit, but he kind of always wanted to do his own thing.
In my head, I thought, “Well, he’s just well-organized, and he’s maybe a little more of a loner and just wants to do his own thing.” I never really worried about him.
When he was about 3, his speech was delayed. But that’s very common in little boys, so I wasn’t worried about it, either. He started to take speech (therapy) at a local elementary school … one hour a day.
And then one day they called me — and I’ll never forget this, because it was always, to me, this is big pivotal moment, and I wish someone would’ve told me face-to-face and not over the phone. And so they just told me, “We think that Mason’s on the spectrum.” And I was like, “The spectrum?” And they said, “We think he could be autistic.”
Victoria didn’t know anyone with autism, so she started researching.
I started to dive into: What is autism? What does that look like in a 3-year-old? And when I tell you it was like I pulled a book off a shelf that said “Autism,” but it might as well have said “Mason,” because it was like reading about my son.
So many things that he had been doing, it kind of all started clicking. He was becoming a very picky eater. He had sensory issues: Whenever kids would yell and scream “Happy Birthday” he would cover his ears. So many things made sense that I just thought, “That’s Mason.”
Then I’m like, “OK. Autism. OK, what are we going do?” We started on the path of speech therapy, occupational therapy, kind of getting him up to all those key milestones.
But I think what was hard for me is what I didn’t know what was coming, like all the social norms that would be really hard for him as he got older.
Listen to “What You’ve Wanted to Know About Autism but Were Too Afraid to Ask” episode of the Chasing Life podcast here.
There’s a lot of tools out there once you start figuring out. But everyday things were tough.
Historically, so much of the conversation around autism has been centered on fixing or changing individuals, but I know for many families, including mine, the mindset can feel limiting. How can we shift that narrative towards truly supporting and empowering individuals for who they are?
Mason and family life
Mason’s a very kind-hearted kid. He’s very sweet. You hardly ever see Mason upset; he’s just very soft-spoken. He’s very direct, very expressive, very sensitive to the point (where he’ll say) “Mom, you were yelling kind of loud, and that hurt my ears.”
He’s extremely close to my mom, his Mimi. That’s his favorite person. He loves his mom, but I’m No. 2, for sure.
I feel like he does a really good job of relating to his brothers. Everett, he’s kind of like the big brother, so he bosses around Mason a lot. Everett’s like, “Mason, Mom already talked about that with you, and she said it’s time to move on. Stop talking about it.”
And Mason will be like, “Thanks, Everett, for trying to help me.” He never takes it as “brother is being mean to me.” He’s like, “brother must be trying to help me.”
And even with Preston, he can be in (Mason’s) space sometimes, and Mason’s like, “Mom, Preston’s in my room, and he’s being kind of loud.” And I’m like, “Well, tell him. Say: ‘Hey, Preston, if you want to be in my bedroom, you’ve got to quiet down.’”
I think teaching him to advocate with his brothers is teaching him to advocate with anybody. So that’s something that’s really important that we do at home. I always tell him, “Speak up for yourself. What do you need? What do you want? You’ve got to be able to advocate for yourself.”
Even though he loves his family and spending time with them, Mason needs his alone time.
If I come and hang out with him, he’s like, “You’re just checking on me for a little bit, right?” He won’t say, “Hey, Mom, can you leave?” He knows he’s got to be polite. But in his own way, he’ll say, “Hey, Mom. You’re just going to stay in here for a little bit, right?”
Life presents challenging moments
It’s still a struggle because when we go places, he stims. He moves his fingers, and people are looking at him like, “What is he doing?” Sometimes he has a hard time looking people in the eye.
Most kids on the spectrum, they’re very blunt. You can’t really tell them to lie. They’re not good at those kind of things. (Mason) definitely says what’s on his mind, and … he’s very direct.
We went to a fiesta on Saturday, and someone wanted to dance with him. She knows the family and was like, “Mason, come dance with me.” So they’re dancing together, and he tells her, “Hey, you’re kind of loud.” And she laughs and she’s like, “I am loud. Yeah, you’re right.”
And I told Mason, “That’s OK, Bubba, it’s just sometimes we don’t want to hurt people’s feelings. You’re right, she does have a loud voice.”
But he’s like, “Well, do I have to apologize?” I’m like, “You don’t have to apologize. But sometimes we can keep those thoughts in our head, too, you know?” Sometimes I have to tell him, “It’s OK to say what’s on your mind, but just think, ‘How would I feel if someone told me this?’ ”
One of the hardest things is, the world is set up for kids certain ways, and Mason being on the spectrum, it’s just not set up for (him). But (kids with autism) are here, they’re thriving, and we want them to be included.
Sometimes it’s about finding a balance or a compromise.
I’ve always felt really passionate about, “Hey, we can have school events, but does the music have to be blaring? We could probably lower it a little bit so that everyone can enjoy.” I feel it’s this balance (between) I want him to go out in the world, but I also know that the world’s not necessarily set up for certain parts of him. I don’t want him to change everything about himself, but the world is the world. … It’s a really hard balance.
Swinging, stimming and Morgan Wallen
Mason loves to swing. That boy loves to swing. We have a lot of them inside and outside. The swings are something that he’s done since he was really, really little, and I don’t know if it’s going to be a forever thing, but it calms him. It’s literally one of the first things he does when he gets home from school. … It’s a sensory thing, and it’s kind of an outlet for him.
He absolutely loves country music, especially Morgan Wallen. That’s his morning jam: He listens to three or five Morgan Wallen songs. He listens to the music, and that’s when he starts to stim a lot, too. I think that’s part of the reason why he likes the Morgan Wallen music, because it’s almost stimming to a beat, if you will. He is so happy when he’s doing it. He’s smiling.
We actually surprised him with tickets to go see Morgan Wallen in Chicago this summer. This is a big deal. He’s been asking, “Mom, how old do I have to be to go to a concert?”
Mason never asked for anything. He’s the easiest kid ever. He never has a Christmas list. He never had a birthday list. So we surprised him with tickets. We are beyond the moon.
But taking a big trip like that requires a lot of planning.
He’s been on the plane before, which he’s done pretty well. I’m not worried about those kind of things. But for example, his schedule: He’s used to seeing his Mimi every other day, and we’re going to be gone for three days. We’ve already started talking about like, “Hey, we’re going to leave on a Saturday morning. We’re not coming back till Monday evening, alright? Do you still want to do Morgan Wallen?” And he’s like, “Yes, yes!”
And then the other part is the concert. This is a loud concert with a lot going on. So I’ve talked to him, like, “Hey, you know a concert’s going to be loud, like very loud. Should we bring your headphones? Let’s bring the headphones just in case it’s too loud.” And so he agreed.
And then I’m thinking about the hotel, I’m like, what’s nearby? Because, you know, he only has four or five things he likes to eat. It’s the Chick-fil-As. It’s the Popeyes. It’s the McDonald’s. Is there one near (the hotel)? Because I want my son to be able to eat.
Mason only eats a very limited diet, probably about 12 things. But he’s open to trying new things.
He’s gone through food therapy. To me what connected it was, he’s comfortable with foods that he knows are always going to be pretty much the same. When you pick up a French fry, it’s usually going to be pretty crispy. You pick up a strawberry — it could be ripe; it could be underripe. So I feel like it’s definitely a sensory thing.
But with that being said, with food therapy, he is open to trying new things. And sometimes he’s trying the smallest little bite that you’ve ever seen in your life. But he’s trying it, technically. And then, sometimes he’s like, “Mom, I want to try spaghetti with meatballs.” And I’m like, “OK, let’s try it.” And so then we’ll whip up a pan of spaghetti and meatballs, and then there he is, eating the smallest bite of noodles and the smallest bite of the meatball. But in his mind, he’s tried it. And we don’t push it.
I remember his food therapist explained to me, there’s something like 30 steps of trying new food. The first 10 steps are, you have to be able to be around it, be able to smell it, be able to see it. And then, it’s the texture and the taste. We just don’t realize there’s just so many things that go into trying something new. And then when you have all those sensory issues, you just don’t realize how hard it is. It’s not that he doesn’t want to try, it’s just really hard for him.
School days
Mason’s in eighth grade, and he is, the majority of the day, in a special needs class for his core subjects so that he gets extra help. But the good news is, he does get pulled out and does social studies with the eighth-grade class, he does P.E., he does science. He eats lunch with his peers.
So that was always one of the things that was kind of important to us that, yes, he has that extra help for the subjects, but then he gets to be around his peers. Let’s give them the best of both worlds.
He craves friendship and companionship just like everybody else.
The friends that he has, they’re either one of our friends’ kids — so our core group — or he has friends in his class. They’ve been in the same class from three to four years ago. So they’ve all moved up together. We know each other’s families.
And probably for the past six months, he started to go to Project Playdate. And it’s really cool because it’s (put on by) one of his classmates’ older sister in high school. And so she’s been helping her brother for years and years. She just decided like, “Hey, why don’t we start a playdate group that has a mix of kids with special needs and (neurotypical) kids?”
So her and her friends — they’re all 15- and 16-year-old girls — they host once a month, and they just do activities with them like baking, crafts. He does that every first Saturday of the month. And he really gets a lot out of that because, while of course he loves his friends that are in his class every day, he sees them all the time. And he likes to be exposed to new friends.
But I will say it’s still hard for him to kind of go up to a new kid. … It’s very hard to really have those social cues of what to say; he still struggles with that.
I remember last holiday season, we were at a (craft store), and Mason was like, “Mom, Mom! That boy goes to my school.” And I’m, like, “OK, well, tell him hi.”
So Mason goes up to him and goes, “Hey, friend.” And the boy completely acts like he didn’t know Mason. … And I told my husband. And my husband was like, “Babe, this is a part of life, and you’re more upset about it than Mason” — because Mason had already moved on. But it was really tough because sometimes kids perceive him as being different, odd, not like all the other boys. But it’s just one of those things I tell myself: “He’s got to go through this sometimes. He’s got to go through it to grow through it.”
A mother’s hopes and dreams
I feel like there’s a lot of focus on kids, but these kids become young adults. Young adults become adults. How do they fit in the world? We’ve been on this journey with Mason — a lot of different therapies; we have a really good family and network — but it does get harder as he gets older. And trying to figure out, what are his next steps? What’s his place in the world?
(Our hopes) have changed over the years, once you see what their abilities are. It’s that balance of, you have all these dreams for them, but then you (have) that realism of, OK, what could they do? It kind of evolves. And you just really are thinking that you just want them to be happy, right? Happy and safe.
When I think of Mason the next five to 10 years, there’s a lot of question marks, for sure. I know he’ll graduate from high school. Do I think that college is something that he might be able to do? That might be kind of harder. He might be able take classes he really enjoys, maybe French, maybe theater.
Victoria also hopes Mason will find his place in the world.
The older they get, sometimes it’s hard for them to find their people, and they can feel very alone. I think I want him to find his find his village of his own people, whether it be his friends, a girlfriend, maybe a wife.
Mason would ask me, “Mom, who am I going to marry?” And I’m like, “Well, she’s out there.” “Well, you know her name?” And I’m like, “I don’t know her name, but she’s out there.”
And then I think to myself, too, “I would like him to drive one day. … (If) he can drive, he can go to his favorite fast food restaurants; he can go see a movie.” He says he want to go to concerts. And then the other part is just some type of independence for him. He’s not going to work, probably, an 8-to-5, have a 401(k), but some sort of independence. Those are some of the big dreams that I have for Mason.
Message to her younger self
If I could talk to Victoria 10 years ago, I would say “Breathe, because it’s going to be a lot. This is going to be a long ride.”
Also to understand it’s OK to be on a different path. I feel like there’s a little bit of grief when you go through this, because you imagine your kid doing X, Y, Z. And now their path looks so different. And I think that you kind of have to just grieve a little bit. There might be some things that they can’t do. There’s a lot of things that they can do.
“Welcome to Holland” (a short essay by Emily Perl Kingsley) sums it up so well for a parent that has a kid with special needs. When you’re a parent, you have all these big dreams … and you think a certain sequence (of milestones) has to happen. And then when you have a kid with special needs, those dreams change. The sequence is there, but it’s a different timeline, for sure. Being a parent with a kid with special needs, I think the hard part has been kind of letting go. … Your normal might be different than 90% of the population, and that’s OK.
It is very scary to have a child with any type of special needs, you know? When you have a child, you raise them so that they can leave the nest. And when your child that may never be able to leave the nest or can’t go far from the nest, it’s very scary think of, “What does Mason’s life look like when I’m gone? … How is he going to be taken care of?” I think that’s been one of the things that I’ve had to work through, throughout the years. And I even tell my husband, “Am I ever going be OK with Mason being on the spectrum?” And he’s always like, “Just day by day.”
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