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Journey Early, who recently appeared on Season 2 of Love on the Spectrum, always felt like she was two steps behind her peers, and not just romantically. She didn’t show much facial expressions and she started talking later than the average toddler. In her teens, Arlie would hide her stuffed animals when her friends came to visit and lie about her interests to fit in.
“I would go home and cry. I couldn’t understand why I felt so uncomfortable being myself,” Early said. “I realized that I couldn’t make friends by being who I was, so I made friends by pretending to be someone else.”
She didn’t understand any of it until the day after her 17th birthday, when she was finally diagnosed with autism. Autism is a developmental disorder that can affect the way people communicate, learn, and behave.
“I was jumping up and down with joy,” she said. “That explained everything.”
Autism is usually diagnosed around age 5, but more and more people are being diagnosed at later ages. For some, like Early, fear of the stigma that comes with an autism diagnosis leads to delays in care. She quietly studied this symptom and how it manifests in girls for two years before asking her parents for a formal evaluation.
But for many others, evaluation was not or was not considered. Autism wasn’t officially recognized by the Diagnostic and Statistical Manual of Mental Disorders until 1980, but the definition changed in 2013, leaving some teens and adults misdiagnosed or not diagnosed at all. It was. Gender and racial biases and unequal access to health care also continue to influence subsequent diagnosis.
But improvements in autism awareness and diagnostic criteria over the past decade have made it easier for these teens and adults to get the support they need to thrive in the neurotypical world. There is no data on how many people are diagnosed with autism in adulthood, but the CDC estimates that 5.4 million adults in the United States have autism.
Many experts agree that it’s better to be diagnosed late than never.
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Earley, now 19, said her diagnosis gave her the confidence to rediscover parts of herself that she had suppressed in order to appear “normal.” She allowed herself to paint things that brought her joy, and set social boundaries with her friends to pursue sewing, playing the piano, or other “laid-back, elderly hobbies.” ”.
“I wouldn’t have wanted it any other way,” she said.
A diagnosis of late-stage autism can cause conflicting emotions.
At the age of 14, Early entered a state of functional depression. “She didn’t see anyone physically, but inside she felt so lost and confused,” she said. She added, “Then she adds that she’s autistic, but she doesn’t know she’s autistic. She feels like she’s doing everything wrong.”
Hiding her true personality and actions weighed heavily on Early, both physically and emotionally. She said: “I felt like I was in a small cell where I had to stand up straight and couldn’t.”
Research shows that people diagnosed with autism aged 21 and older are more likely to have mood, anxiety, personality, and eating disorders than those diagnosed in childhood. It is known to be nearly twice as high.
If Early had known about her diagnosis when she was younger, she said she would have been better able to recognize her needs. But the label could also do more harm than good.
“At the time, there were a lot of things that people with autism were told they couldn’t do,” Early says. lifetime. “
Early’s mother feared that her daughter’s motivation and self-esteem would be damaged if she was diagnosed with autism, so she did not have her diagnosed, even though she suspected she might have autism. When Early was diagnosed, she apologized.
“I don’t want my mom to feel bad because she hasn’t done anything wrong. I mean, look at me now,” Early said. “I have accomplished so much.”
Now, an autism diagnosis can lead to resources that not only help people thrive, but also eliminate the stigma that comes with the label, says John, director of Penn Medicine’s Adult Autism Spectrum Program. said Dr. Edward Brodkin.
“Autism is not a disease that requires treatment. Autism is part of a broader diversity of human behavior and personality,” said Brodkin, who has helped diagnose autism in people over 60. said.
“It can be really disorienting.”
After the initial burst of relief subsided, Early felt that “imposter syndrome” was taking over after her diagnosis. “He had spent so many years without telling the truth that he had forgotten who he really was and what he really liked.”
Brodkin said it can be “really confusing” for adults to adjust to the diagnosis, which can take months.
Fortunately, those close to Arlie welcomed her diagnosis. They told her that the “quirky” traits associated with her autism were what they loved most about her.
But not everyone is so receptive. It can be difficult for friends and family to understand when someone they’ve known since childhood shares that they were diagnosed as an adult.
“Autism symptoms become more subtle and sophisticated as we get older,” said Gregory Wallace, an associate professor of speech and hearing sciences at George Washington University who studies autism in adults. “It’s difficult for people with schizophrenia to change their environment.” However, they are often asked to do both in order to harmonize. ”
This misconception is also prevalent among health care providers who specialize in adult autism. “Unfortunately, not many health care providers are comfortable diagnosing adults with autism,” says Dr. Elizabeth Wise, medical director of the Johns Hopkins Adult Autism and Developmental Disorders Center. Adult autism clinics are also often uninsured, further increasing the barrier to appropriate care.
Although research on autism in adults has expanded significantly over the past decade, only 2% of all autism research funding in the United States focuses on issues in adults.
community issues
Homeschooled for the majority of her education, Early didn’t feel like she could relate to anyone around her. And even though she had access to parts of the community she was a part of, she wasn’t black enough, autistic enough, or gay enough to make her feel welcome.
“It wasn’t that I was uncomfortable being black, I just didn’t have the experience of interacting with other black people,” Early said. “And I got a lot of judgment for being autistic and following my interests and dressing the way I am.
“People often feel like they have to fit into a box, and if they don’t, there’s something wrong with them,” she added. “But I feel like that box is really small for Black women.”
When it comes to autism, just being female is isolating enough. According to the CDC, autism is nearly four times more common in men.
However, participation in “Love on the Spectrum” helped early on in this aspect.
“What I’m discovering is this really feels like an underground city of people,” Early said. “I’m so happy to be a part of it and to be accepted regardless of our differences.”
She is preparing to graduate pastry school next year and is working on an Etsy page to sell her art. But as far as her dating life is concerned, Arly was willing to put it on hold.
“I guess you could say I’m still looking for love, but it’s definitely slowed down,” Early said. “There are so many great things happening in my life that I don’t feel like I need to be in a relationship with anyone to enjoy them.”
Then read this:Autism diagnosis rates have tripled in less than 20 years. What does that mean for schools?
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