How adults diagnosed with autism navigate changes

(NEW YORK) — When many people think of autism and an initial diagnosis, they think of children. A growing number of adults are learning they have autism, and their condition has gone untreated for years.

“The Bachelor” star Demi Burnett, 28, sat down for an interview with “Nightline” co-anchor Juju Chang to reflect on how she said her diagnosis last year put her life into perspective.

“It’s not like there’s a specific social interaction,” Burnett said. “There’s just this feeling of, anxiety of ‘I need to put on the show.'”

Burnett first found stardom on ABC’s “The Bachelor,” and later “Bachelor in Paradise,” but behind the scenes she was grappling with a crippling social anxiety she could never understand. For years, she says she “performed” her way through the anxiety, doing her best to mask it from others.

“It’s a performance to save your life though, because, like, it’s necessary,” Burnett said.

An autism diagnosis at the age of 26 suddenly put things into perspective and helped Burnett understand why she’d struggled with social interactions for most of her life.

“I want to be able to provide, like, that space for people to…relate, and not feel alone in this, or not feel stupid about it,” Burnett said.

An estimated 5.4 million adults, or 2.2% of adults, have Autism Spectrum Disorder (ASD), according to the U.S. Centers for Disease Control and Prevention, and while it usually is diagnosed in childhood, there are a number of reasons why it may not be detected until later in life.

“One of the reasons we often see or delay a diagnosis in adulthood is that those who might have average or above average intellectual ability might kind of fly under the radar or be able to mask some of their symptoms,” Carla A. Mazefsky, who serves as the Nancy J. Minshew, M.D. Endowed chair in Autism Research and professor of psychiatry, psychology and clinical and Translational Science at the University of Pittsburgh, told “Nightline.”

Mazefsky said that as awareness of Autism Spectrum Disorder has spread, the increasing diagnosis of children is also triggering some parents to begin to wonder about themselves, too.

Celebrities like singer Sia, actor Wentworth Miller, former NBA player Tony Snell, and former NFL player Joe Barksdale are helping shine a spotlight on being diagnosed with autism as adults.

In May, the “Chandelier” singer discussed her neurodivergence on “Rob Has a Podcast.”

“I felt like for 45 years, I was like, ‘I’ve got to go put my human suit on.’ And only in the last two years have I become fully, fully myself,” Sia said on the podcast.

Burnett says she has relied on masking, a coping mechanism sometimes used by individuals with autism to hide sensory sensitivities, social and communication challenges, and repetitive behaviors that may be hallmarks of autism.

“The mask is very protective…because you can’t be your true self in the real world sometimes…because we have been ourselves and there were negative reactions that traumatized us,” Burnett added.

Since her autism diagnosis, Burnett says she has begun her process of unmasking by making accommodations for her sensory challenges, no matter how they may look to the outside world.

She now prefers wearing big, baggy clothes, and often wears no make-up in her private life and in some of her social media posts. Headphones or earplugs give her a noise buffer she says she needs, and repetitive movements like painting eases her anxiety.

Burnett says her biggest source of support and comfort is her dog, Sandor.

“My dog regulates me. One of the biggest things that I need is another nervous system to regulate me, to let me know that I’m safe,” Burnett said.

Burnett has begun chronicling her journey on social media joining a growing community of people across the spectrum documenting how they’re living with autism.

Chelsia Potts said she uses her TikTok to provide tips that she’s found useful.

Having amassed close to 200,000 followers, Potts has shared what she’s found to be significant about discovering one’s autism as an adult.

“[A diagnosis] removes this idea that you’re weird or that you’re odd or that you’re just socially awkward, and it puts it in a spot where you can say, ‘Oh, I’m autistic and it’s okay for me to need these things,” Potts told “Nightline.”

Last December, at 33, Potts said she was diagnosed with ADHD and autism. Potts uses her platform to discuss her experience and draw attention to how scarce the availability of an autism diagnosis is for specific demographics.

“Multiple girls, especially girls of color, have been missed throughout the years because we were never included in what would be considered the criteria for autism,” she said.

Experts say that they are seeing late diagnoses of autism most often in women and people of color.

“I think there are several reasons if that’s the case. Women might be a little bit more prone to masking as one reason and also, historically, autism was really thought of as kind of a male disorder,” Mazefsky said. “And one additional really important factor is access to resources. So it’s still the case that many people are not trained in autism diagnoses. And so being in an under resourced neighborhood or rural neighborhood really limits opportunities to receive a professional diagnosis of autism.”

Potts’ 10-year-old twins share her diagnoses – both Kennedi and Braelyn have ADHD and her daughter Kennedi has Autism Spectrum Disorder. Potts says she’s learned through their journeys what she missed out on, and sees a younger version of herself when she looks at her daughters.

“I think getting diagnosed as a kid can help you advocate for your needs a lot early and practice that in a much safer environment,” she told “Nightline.” “Whereas when you’re diagnosed as an adult, and especially if you’ve never suspected it, then you’re really going back, and you’re rethinking your whole life.”

Potts wants to give her daughters the understanding and patience that she never knew she needed herself.

As an adult, Potts has thrived professionally. She is an academic with a doctorate in education, but says work is still a challenge, and communicating with others communication is a minefield. Potts has found ways to push past some of her anxiety around the workplace, for now. Small adjustments such as working from home, or dimming the lighting in her office, making her windows more private, and using stress balls and fidget toys to calm her restlessness, have helped. She considers herself lucky.

Studies in peer-reviewed journals suggest that up to 75% of adults with autism are underemployed.

Mazefsky said that adults with autism may fall off of what is known as the “services cliff.”

“As children phase out of school and transition into adulthood, they may experience less services and structured supports. There’s so many gaps, and what we have available for autistic adults, it’s nowhere near where it needs to be,” Mazefsky said.

However, there are a growing number of programs designed specifically to support adults with autism.

Heidi Stieglitz Ham, Ph.D. created Spectrum Fusion, a Houston-based nonprofit organization creating a space for community, programming that includes skills and job training and they also employ autistic adults in media production through their Spectrum Fusion Studios team.

“There’s a stereotype of individuals on the spectrum that excel in math and science. But we have the rest of the spectrum to consider,” Ham said.

One of the participants, John Karl Barth, recalled having a “terrible experience” in college before dropping out, but Spectrum Fusion offered a prospect where it appeared that he had none.

“Now, against all odds, I actually have a job in a field I want to work in,” Barth said. “This is a workplace that is very much made with adults on the spectrum in mind, which most jobs in any field aren’t.”

As Barth, Burnett, Potts, and others learn to live as adults with autism, each day brings a new sense of hope for what they want to achieve for themselves.

“Sometimes we don’t think about how we have been socialized to do certain things,” Potts said. “How do we get to a point where we can be okay with being ourselves?”

Potts doesn’t think it has to be an impossible dream.

“Am I really that different? Or am I just coming from a different perspective?” Potts said.

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