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Teen girls with autism face 'unique challenges.' This new Freeform show tells their stories

Christine Fellingham
Special to The Courier Journal

When our youngest daughter hit middle school and simultaneously received an autism diagnosis, I found that I had to toss the rule book and rethink almost every mom-skill I thought I had mastered. And that’s nothing compared to the learning curve she’d been thrown. 

If the teen years are potentially rocky for any girl, they can be a minefield for a girl with autism. Their social differences often cause them to be ostracized by their peers, yet, at the same time, the invisibility of their disorder leads to frequent misunderstandings with adults, teachers and even family members. Their lives can seem like a perpetual paradox.

“Adolescence doesn’t discriminate; it’s tough for all of us,” said Stephanie Powers, a licensed psychologist who specializes in children and teens with Autism Spectrum Disorder. “Girls with autism face unique challenges, though, because of how difficult it can be to interpret social situations, which become much more complex during adolescence. I often see teen girls with autism who lack the skills and confidence to form friendships.”

Kaelyn Martin, a Mercy High School senior who was diagnosed with autism at the beginning of freshman year, explained her challenges this way: “I can’t detect subtle sarcasm and tend to take jokes seriously. People look at me weird if I don’t understand a joke, which makes me feel left out. I also have trouble talking to teachers for help and getting out of my comfort zone to make new friends.”

This is why some members of the autistic community and their advocates cheered when a new television series called "Everything's Gonna Be Okay" debuted this month on Freeform. The groundbreaking show features a teenage girl character with high functioning autism and, maybe more significantly, an actress with autism in that role.

Seeing a female with autism achieve public success is a game-changer for these girls.

“People are more likely to seek (and emulate) role models they can identify with,” said Julie Robinson, director of Behavior and Learning at Dreams with Wings. “So for teens with ASD, just like any other group of people, a certain threshold of being able to identify with someone must be reached before they feel that they can achieve similar experiences and outcomes. Decades of research have established that the likelihood of learning increases if the role model is of the same sex, ethnicity, or skill level, therefore making it so important for teenage girls with ASD to have role models also with ASD.”

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This moment was huge in our house, where we had been put on high alert by Lila, who is now a freshman at The J. Graham Brown School in Louisville.

Time stood still and all other activity stopped for the 90-minute, three-episode debut that we can only hope will spark a quiet revolution of acceptance and understanding. She watched upstairs, alone, while texting with a friend from her autism social skills group during commercial breaks.

Their verdict was unanimous: The show, the character (“Matilda”) and the performance by actress Kayla Cromer all got an enthusiastic thumbs up. 

“Autistic individuals are a minority. And we have certain specific experiences,” my daughter Lila said. “There is no way you can truly understand what someone with autism goes through every day and what it’s like to be in our skin, but she can understand that. She’s doing a fantastic job.”

For Lila and many others like her, navigating the social minefield isn’t the only hurdle to overcome.

“Being a teenager is filled with struggles under even the best of circumstances,” said Foster McCarl, a board member for Bluegrass Center for Autism and the father of a teenage daughter with autism. “When you throw in the additional social and emotional challenges of autism, it can cause a lot of misunderstandings and stress. Ultimately, the biggest challenge for us, though, has been lack of knowledge within the medical community. There are very few providers who have understanding or training in working with this young adult population, and it’s so much more difficult to find help for these teens than it should be.”

Kaelyn said seeing Cromer as one the lead characters in the show is empowering and often more realistic.

“It’s a great idea to have an autistic actress playing an autistic person because it is guaranteed to be accurate about how an autistic person will actually react to certain situations,” Kaelyn told me.

Case in point: During one episode, Matilda experiences a meltdown after she unintentionally commits a social blunder that embarrasses her younger sister at school. She hits the ground and swings at a tree with her lunchbox, then runs off to play piano in an empty auditorium, while her sister calmly says to her friends, “She’ll be fine in about 20 minutes.”

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And she was.

(I have to wonder: Could watching this situation play out on TV possibly prevent someone from inappropriately intervening or escalating a real-life meltdown? We hope so.)

Her entrance into school was also instantly recognizable. Matilda waits outside for the crowd to pass through the front doors, then walks in a few minutes behind. She then half-skips down the hallway, jumping to touch a banner, tapping several lockers and fixing a poster on the way — behavior so common to anyone familiar with autism, but baffling and even infuriating to those who aren’t.  

EVERYTHING'S GONNA BE OKAY - "Silkmoths" - Nicholas is terrible at love! Genevieve's ambivalence about Nicholas' boyfriend Alex takes an unfortunate turn when the three go out together. Matilda wants to bake Luke a cake but takes her brother's advice. Pictured: Kayla Cromer

For both autistic girls and parents, the hope is that seeing these everyday realities of autism on television will normalize and humanize them.

“I hope that it shows that autistic people are able to do things that neurotypicals can, that we aren’t very different from them. Our brains simply process information a little differently,” said Kaelyn. 

This overdue media moment comes at a time when medical experts are just beginning to realize that the huge, longstanding gender gap in autism diagnoses is caused not by a dramatically greater incidence in males, but by a systemic misunderstanding and misreading of autism characteristics in females.

A study from the Children's Hospital of Philadelphia, released late last year, revealed what so many experts, parents of autistic girls and the girls themselves know: Autistic girls present differently from autistic boys. Consequently, they tend to get overlooked, misdiagnosed or never diagnosed at all. 

“Girls on the spectrum tend to be better at masking their symptoms,” explained Powers. “They often learn over time to find more socially acceptable ways of stimming (soothing themselves by making repetitive movements or sounds) and learn to mimic their neurotypical peers. They use language differently than boys on the spectrum and are often more socially motivated.

"Regardless, research shows that even when symptoms are identical, boys are diagnosed more than girls. This is probably due to the misconception that autism is a ‘male’ diagnosis.”

The numbers paint a predominantly male picture of autism: Boys are four times more likely to be diagnosed with autism in general. They are 10 times more likely to be diagnosed with high-functioning autism. In fact, when autism was initially recognized, it was defined as a male disorder. 

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“This (thinking) results in parents, teachers and peers misunderstanding the girls’ difficulties and it prevents girls on the spectrum from developing a real sense of self-worth,” said Powers. “They recognize that they are different and that they struggle, but have no explanation.” 

Which is why witnessing this television first of an autistic actress playing an autistic teenage character living her everyday life which includes going to a mainstream public high school, joking around with her siblings, delivering her father’s eulogy (a key plot development) is such an important moment of representation and validation for many of them. 

EVERYTHING'S GONNA BE OKAY - "Silkmoths" - Nicholas is terrible at love! Genevieve's ambivalence about Nicholas' boyfriend Alex takes an unfortunate turn when the three go out together. Matilda wants to bake Luke a cake but takes her brother's advice. Pictured: Kayla Cromer

Lila put it this way, “The show is poignant for me because I am a girl with autism and ... the characteristics of [Matilda’s] autism are very similar to the characteristics of my autism. I just think people should understand that her autism doesn’t look like everyone else’s; there are many people like Matilda, but there are also many who are divergent from Matilda."

"However, I do think this show will be especially beneficial for the autistic community because it shows that though we might do it differently,  individuals with autism can be friends, big sisters, and even successful actors," she said.

This media milestone is just as encouraging to parents, who often find themselves without examples they can hold up to their children.

Rebecca Martin, Kaelyn’s mom, said, “If girls with autism can see there are others out there who experience similar difficulties, they may feel better about their challenges. I also think that parents of children with autism will benefit… Lastly, I think that if more people who have no experience with autism can gain a better perspective, it will allow for more understanding and acceptance.”

Hopefully, this remarkable turning point in on and offscreen neurodiversity won’t go unnoticed and will indeed inspire a shift towards greater inclusion and opportunity for girls with autism and others with differences.

EVERYTHING'S GONNA BE OKAY - "Giant Asian Mantises" - Matilda wants to get white-girl-wasted! Genevieve's low-key birthday party leaves Nicholas, Alex, and Matilda banished to the guest house. In the main house, Tellulah turns things up a notch. Nicholas is stuck being the responsible adult. Pictured: Kayla Cromer

“Just the fact that people were able to look past the challenges she faces and see that she is a great actress who just needs a little more help in some ways and maybe a little less help in others… I think that’s really a good sign,” said Lila. “They looked past the challenges and saw the gifts.”

That’s exactly what girls with autism and those who love them try to do on a daily basis. 

“We are still working on some social and emotional regulating skills,” McCarl said of his daughter. “Her goal is to finish high school and go on to possibly get a job in the anime industry. She is a gifted artist, writer, and storyteller.”

Kaelyn too is both optimistic and philosophical about her future.

“Autism has been beneficial to me as well as being a challenge,” she explained. “I am very detail-oriented and organized. This helps in a school and work environment, in achieving good grades and getting my work done on time. My future goals are to be an author or a biomedical laboratory scientist.”

My daughter Lila is contemplating a career as a clinical research psychologist and literature professor.

“As people become more aware and more girls are diagnosed earlier, I think more girls with autism will want to go into psychology and become advocates for everyone with mental and neurological differences,” she said.

With new media representation and research comes the hope that these girls will indeed be able to achieve their dreams and make their unique and valuable marks on the world.

“These girls have beautiful minds,” said Powers. “With compassion, acceptance and appropriate supports, they meet their potential. Many of them become our brightest scientists, engineers, artists and educators and this is in part because of their autism, not in spite of it.”

Editors Note: This show contains some adult content relating to other characters that parents may find unsuitable for younger children and even their teens. Parents may want to preview the episodes.