Demi Burnett Gets Vulnerable About Life With Autism: “I Don’t Take Care of Myself”

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Demi Burnett, 28, is most known for her bold and bubbly personality on the Bachelor franchise. Throughout her time on season 23 with Colton Underwood, as well as her stints on “Bachelor in Paradise,” Burnett presented as an outspoken force that wasn’t afraid to be herself. But in an exclusive interview with POPSUGAR, the reality star shares that until April 2022, she didn’t even know who she was. That’s when Burnett was diagnosed with autism, a revelation that completely changed her self-perception and helped make sense of symptoms — including overstimulation and difficulty with hygiene — that she’s experienced for most of her life.

Burnett first shared that she’d been diagnosed with autism on Instagram last year, going into more detail about her diagnosis on TikTok. While Burnett received tons of support after opening up about her diagnosis, she was also met with a fair share of skepticism, a reaction that highlights common stigmas and misconceptions around neurodivergence — namely, that it looks a certain way. “People on Instagram are so funny because they’re like, ‘You don’t look autistic.’ And I’m like, ‘You don’t know what I look like. You know what I want you to think I look like,'” Burnett tells POPSUGAR.

In reality, she refers to the well-dressed firecracker you see on screen as her mask. “It’s a safety armor that I created,” Burnett tells POPSUGAR. “I love being that mask. Honestly, it feels really happy and it feels really good because I know how to nail it.” (“Masking” is a term that’s often used by people with autism to describe the behaviors they adopt in order to avoid stigma, such as suppressing stimming or other aspects of their identity.)

But underneath that mask, Burnett felt a sort of tension within. “The biggest thing for me, is something that I’d always kept hidden, and it was this gut feeling of dread,” she tells POPSUGAR. “Every time I got invited anywhere, anytime I had to leave the house and socially interact with people — it’s this feeling of doom.”

What Burnett worked so hard to hide was that she often has trouble meeting her basic needs. “I don’t take care of myself,” she admits. Like many people with autism, she struggles to keep up with basic hygiene and grooming, including showering and brushing her teeth. “And also feeding myself,” she adds. “It’s so hard for me to eat because [there are] so many demands that come with eating, like deciding what to eat, preparing the food, sitting down, eating the food, cleaning it all up,” Burnett explains. Even as we speak over the phone, she says, “No one would believe what I look like . . . I haven’t showered in three days.”

Before being diagnosed with autism and learning that she’s not alone in experiencing these behaviors, they caused her shame. And for a while, Burnett used alcohol to cope with those feelings, especially when she was on reality TV. “I started drinking a lot, because alcohol made me feel so much better. And it made me be able to exist without being sorry,” she says.

But in 2021, she’d reached a breaking point after experiencing several “emotional breakdowns.” “I was trying to figure out what was going on in my brain,” Burnett tells POPSUGAR. “I didn’t have a lot of like people that were talking about the same experiences that I was going through.” And so she sought out help.

Burnett already had a hunch that she might have autism. “My freshman year of college, I had this same exact thought of ‘I’m autistic,'” she tells POPSUGAR. Back then, when she told her parents and friends her suspicions, Burnett says, her feelings were dismissed. So this time, she took matters into her own hands, seeking out a formal diagnosis.

She was diagnosed with autism — and based on her own research, she flagged to her neuropsychologist that she felt her symptoms fell in line with an autism profile called pathological demand avoidance (PDA), which isn’t diagnosable in the US but is more commonly acknowledged in the UK. PDA “describes those whose main characteristic is to avoid everyday demands and expectations to an extreme extent,” the UK-based National Autistic Society notes. There’s some controversy around the name “pathological demand avoidance,” which has been criticized as having negative connotations.

“It made everything click 100 percent,” Burnett tells POPSUGAR of the PDA profile. “Like [once I knew] I was autistic, I was like, ‘Yes, this makes sense. But also I don’t understand it, and it kind of doesn’t.'” PDA helped her make sense of some of her experiences as far back as childhood, she says: “Everything aligned with it.”

For example, baths were always a point of contention. “I remember pooping in the bathtub — that was a real weird experience. I didn’t know why I did it,” Burnett says. But looking back, she says the behavior served as a way for her to ignore her internal demands, which falls in line with what she knows about PDA behaviors.

When she was growing up, Burnett’s family didn’t have a name for her behavior but still found ways to manage it. “To get me to take a bath, my granny would role-play the servant and I was the queen. She had this big Jacuzzi tub, and so she would always fill this huge bath with all these bubbles and serve me treats and serve me juice, and she would pretend to be the servant. And it was like our little game. But that’s how she got me to take the bath. [She used] fantasy and role-play without even realizing that that’s a strategy [for PDA management],” Burnett says.

Today, Burnett still struggles with elements of hygiene. But she’s learned to give herself grace and focus on other accommodations to make her life easier. For overstimulation, “I always make sure I have some kind of noise-canceling headphones or Loop Earplugs,” Burnett says. She’s also created stations inside her home for painting and crochet where she can easily access and do activities without feeling overwhelmed. “I need to have things that I can do without much thought, or else I get stuck in anxiety and I get stuck in freeze,” she says.

Fostering community has been a new and important aspect of her life, too. In being more vulnerable about her journey online, Burnett says she’s been able to meet people with similar experiences and encourages others to look for online communities for support.

Burnett also admits formal diagnoses can be incredibly inaccessible. “It cost me thousands of dollars,” she tells POPSUGAR. For that reason, she emphasizes that self-diagnosis is valid. “There’s a lot of people who will probably try to brush you off or diminish what you think your mental health issues are. There will be people who dismiss labels and will make you feel stupid for getting into all of this,” Burnett says. “But just know that there is a community of people that will believe you and support you,” with or without a formal diagnosis.

And in continuing to share her own experience, Burnett hopes to be one of them.