Benjamin Ashford|At 17, she found out she was autistic. It's a story that's becoming more common. Here's why.

Journey Early,Benjamin Ashford who recently appeared on Season 2 of "Love on the Spectrum," has always felt two steps behind her peers — and not just romantically. She didn’t show as many facial expressions and started talking later than the average toddler. As a teen, Early would hide her stuffed animals when friends visited and lie about her interests just to fit in. 

“I would go home and cry because I couldn’t figure out why I was so uncomfortable with being myself,” Early said. “I learned that I couldn’t make friends by being me, so I made friends by pretending to be someone else.” 

None of it made sense until the day after her 17th birthday when she finally got a diagnosis: autism, a developmental condition that can affect how people communicate, learn and behave.

 “I was jumping with joy,” she said. “It explained everything.”

Although autism is typically diagnosed at about age 5, a growing number of people are receiving their diagnosis at later ages. For some, like Early, fear of the stigmas associated with an autism diagnosis contribute to a delay in care; she quietly studied the condition and how it presents in girls for two years before asking her parents for a formal evaluation. 

But for many others, an evaluation wasn’t or isn’t on the table. Autism wasn’t officially recognized by the Diagnostic and Statistical Manual of Mental Disorders until 1980, and in 2013 its definition changed, leaving some teens and adults misdiagnosed or not diagnosed at all. Gender and racial bias, as well as unequal access to health care, also continue to play a role in later diagnoses. 

Over the last decade, however, improvements in autism awareness and diagnostic criteria have made it easier for these teens and adults to get the support they need to thrive in a neurotypical world. There aren't data on the number of people diagnosed in adulthood, but the CDC says that 5.4 million adults in the U.S. have autism.

Many experts agree that a diagnosis is better late than never. 

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Early, now 19 years old, said that her diagnosis has given her the confidence to rediscover parts of herself that she suppressed for the sake of seeming “normal.” She’s allowing herself to paint what brings her joy and setting social boundaries with friends to leave time for sewing, playing the piano or any one of her “other million leisurely elderly hobbies.” 

“I would not have wanted it any other way,” she said. 

Late autism diagnoses can spur conflicting emotions

Around age 14, Early entered a state of functional depression. “Nobody could physically see it, but inside I felt so lost and confused,” she said. “Then add being autistic, but not knowing you’re autistic. You feel like you’re doing everything wrong.”

Masking her true personality and behaviors weighed on Early physically and emotionally: “I felt like I was in a small jail cell where you’re forced to stand up straight but can’t.”

Studies have found that people diagnosed with autism at age 21 or older are nearly three times more likely to have mood, anxiety, personality or eating disorders than those diagnosed in childhood.

If Early learned of her diagnosis at a younger age, she said she would have been able to better recognize her needs. But the label also could have done more harm than good. 

“Back then, there were so many things others said autistic people couldn't do," Early said. "If I had those ideas in my head, I don’t think I would have tried nearly as many things as I have in my lifetime.”

Early’s mother was afraid an autism diagnosis would hurt her daughter’s drive and self-esteem, so she didn’t have Early evaluated despite suspecting that she may be autistic. When Early was diagnosed, she apologized. 

“I don’t want my mom to feel bad because she did nothing wrong. I mean look at me now,” Early said. “I have accomplished so much.”

Today, an autism diagnosis can lead to resources that not only help people thrive, but also chip away the stigmas associated with the label, said Dr. Edward Brodkin, director of the Adult Autism Spectrum Program at Penn Medicine.

“Autism is not a disease that needs to be cured," said Brodkin, who has helped diagnose autism in people past age 60. "It’s part of the broad diversity of human behavior and personality."

'It can be really disorienting'

Once the initial burst of relief subsided, Early felt “imposter syndrome” take over after receiving her diagnosis: “I spent so many years not telling the truth that I forgot who I really was and what I really liked.” 

Brodkin said "it can be really disorienting" for adults to adjust to their diagnosis, which can take months.

Fortunately, people close to Early welcomed her diagnosis. They told her the “quirky” characteristics associated with her autism are the ones they love most about her. 

But not everyone is so accepting. It may be difficult for friends or family to understand when someone they've known since childhood shares that they were diagnosed in adulthood.

“Autism symptoms are much more nuanced and sophisticated as you get older," said Gregory Wallace, an associate professor of speech, language and hearing sciences who studies autism in adults at The George Washington University. “It's harder for autistic adults to change their environment or behavior, but they're often asked to do both to fit in.”

This misunderstanding is prevalent even among the health care providers that specialize in autism in adults. “Unfortunately, there aren’t many providers who feel comfortable diagnosing adults with autism,” said Dr. Elizabeth Wise, medical director of the Adult Autism and Developmental Disabilities Center at Johns Hopkins Medicine. Adult autism clinics often don’t take insurance either, adding more barriers to appropriate care.

Although research on autism in adults has expanded significantly in the last decade, only 2% of all autism research funding in the U.S. focuses on adult issues. 

Community matters

Homeschooled for most of her education, Early never felt like she could relate to anyone around her. And even if she did have access to some of the communities she belonged to, she was still never Black, autistic or gay enough to feel welcome.

“It wasn't that I felt uncomfortable in my blackness, I just didn't have any experience socializing with other Black people,” Early said. “And being autistic with the interests that I have and dressing the way that I do, I’ve gotten a lot of judgment.

“People often feel like you should fit in a box, and if you don't there's something wrong with you,” she added. “But I feel like that box for Black women is really small."

When it comes to autism, just being a woman is isolating enough. Autism is nearly four times more common among males, the CDC says. 

But joining "Love on the Spectrum" helped Early on this front. 

“I really do feel like it’s an underground city of people that I’m discovering," Early said, "and I’m so happy to be a part of it and accepted regardless of my differences.”

She is preparing to graduate pastry school next year and is working on an Etsy page to sell her art. As far as her dating life is concerned, though, Early has happily put that on pause. 

“You could say I'm still looking for love, but I'm definitely slowing down,” Early said. “There are so many great things happening in my life that I don't feel the need to be in a relationship with anybody to enjoy those things.”

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