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autism speaks

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Teenager creates eye-opening videos that shatter stereotypes surrounding autism and girls

"I get that a lot, that because I'm good-looking, nothing can be wrong with me — so I want to show that mental illness is diverse."

via paigelayle / Instagram

The most recent data shows that about one in 68 children in the U.S. are affected by autism and boys are four times more likely than girls to be diagnosed.

Autism Spectrum Disorder (ASD) is marked by communication and social difficulties, sensory processing issues, and inflexible patterns of behavior. Almost everything that researchers have learned about the disorder is based on data derived from studies of boys.

However, researchers are starting to learn that ASD manifests differently in girls. This has led many girls to be undiagnosed or misdiagnosed.

"The model that we have for a classic autism diagnosis has really turned out to be a male model," Susan F. Epstein, PhD, a clinical neuropsychologist said according to Child Mind.

"That's not to say that girls don't ever fit it, but girls tend to have a quieter presentation, with not necessarily as much of the repetitive and restricted behavior, or it shows up in a different way," Epstein added.

Stereotypical ASD behaviors may also get in the way of recognizing the disorder in girls.

"So where the boys are looking at train schedules, girls might have excessive interest in horses or unicorns, which is not unexpected for girls," Dr. Epstein notes. "But the level of the interest might be missed and the level of oddity can be a little more damped down. It's not quite as obvious to an untrained eye."

Girls with ASD are usually better at hiding their autistic behaviors, so they suffer in silence.

Paige Layle, a 19-year-old eyelash technician from Ontario, Canada, has autism but because she's a social butterfly, most people don't realize she has the disorder.

"I get that a lot, that because I'm good-looking, nothing can be wrong with me — so I want to show that mental illness is diverse," Layle told BuzzFeed.

To help people better understand how autism manifests in girls and women, Layle has made a series of videos on her TikTok page.

"I decided to start making videos because of an audio that was going all over TikTok that was making fun of autistic people. I hated it. I feel like many people don't understand how many people are autistic," she said.

Layle's videos are eye-opening because they shatter some big myths about autism and show how difficult it can be to live with the disorder, especially if you don't know you have it.

@paigelayle learn more about autism! :) i get many questions every day to make more vids about it, i will continue to show you guys! #feature #fup #fyp #featureme ♬ original sound - paigelayle

In the first video, she explains how the initial research done on autism was only on boys or men.

"Girls usually end up showing different traits than guys do. Which is why it can take us years to get diagnosed. I was 15 when I got diagnosed and that's considered early for a girl."

She also explains that girls often are diagnosed later because they are better at hiding autistic behaviors.

"This is something we call masking. Masking is basically just being like a really good actor.

It's where you take traits that everyone else is showing and start portraying them as yourself. It's like a lot of copying going on. ... In your mind you don't think you're copying. You think that this is normal and everyone feels the same way you do.


You basically feel like an alien and you're really good at hiding that. Which is why I don't seem autistic."

In part two, she discusses the idea of being high-functioning.

@paigelayle no such thing as high/ low functioning autism!!! it’s just how YOU perceive us. not about how we’re affected. #feature #featureme #fup #fyp ♬ original sound - paigelayle

"Get high-functioning and low functioning out of your vocabulary. It doesn't help anybody. I know you may think that saying 'Oh like you're high-functioning' is compliment. It's not a compliment. It's also like a reminder that I'm just masking, and it's so hard.

Masking is the most exhausting thing in the world... 'High-functioning' is basically a label that you can use to be like 'Your autism doesn't affect me that much.' But I'll tell you that everyone you think is high-functioning is greatly affected by their autism."

In part three, Paige discusses common autistic traits that girls have.

@paigelayle more on special interests later ☺️ #feature #autism #fyp #fyp #featureme ♬ original sound - paigelayle

"I am overly social. I give way too much eye contact. I'm really good in social situations. It's also very common for girls with autism to have other mental disabilities or mental disorders as well. I have seven and one of the main ones is OCD.

All of these mental illnesses stem from having autism. But OCD, anxiety, and depression are very common, especially in girls. Just the feeling that the world needs rules for you to understand it. That's why a lot of autism special interests include things like anatomy, the human body, psychology, just figuring out how the world works is our way to figure out how to live in it."

In part four, Paige discusses the topic of masking.

@paigelayle ahhh masking. can’t live with you, can’t live without you. #feature #fup #fyp #featureme #autism ♬ original sound - paigelayle

"When you're in the autistic closet and you are not known to be autistic yet ... you like subconsciously know that you're weird and you don't know how to act or how to be.

It's like the way you walk, the way you talk, the way you wear your hair, like your mannerisms. Like everything you say. Everything you think. Everything you think that you enjoy. It's all what you are accustomed to from your peers.

I've been diagnosed for four years and I'm still trying to figure out who I am and what I actually like to do. You just get to used to creating this mask that when it's like 'Hey, you can take it off,' It's like what the frick is underneath it? I don't know what's going on."


This story originally appeared on 03.11.20

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Family

A major autism advocacy org just gave up on finding a cure. That's great news.

There's a notable absence in Autism Speaks' new official mission statement.

The country's largest nonprofit for autism advocacy removed any language that made autism sound like an illness or disease.

Gone is the reference to autism as an "urgent global health crisis," and funding research toward a cure is no longer a priority. In fact, there's not even any mention of "hardship" or "struggle" anymore.

Now, their first objective is "promoting solutions." Their updated mission statement — which went into effect in late September 2016 and was the first change since the organization was founded in 2005 — focuses instead on things like "support" and "understanding" and "acceptance."

Photo by Mircea Restea/AFP/Getty Images.

It might sound strange that a massive nonprofit organization committed to autism spectrum disorder is no longer searching for a cure.

But the truth is that people with autism often live happy, healthy lives. This doesn't mean life isn't frustrating for people on the spectrum or for families and friends of people with autism, of course. But for those 1 in 68 people who fall on the spectrum of autism disorder just because their brains work differently doesn't mean they don't work.

In fact, some companies actively seek applicants with autism in hopes of harnessing the cognitive qualities that make them unique. This demonstrates a larger shift toward viewing autism as a set of functional behaviors rather than a problem or disorder that needs to be "solved."

(This is also why some people with autism prefer to be called "autistic people," too, as a way to embrace something they consider to be an central part of them.)

"Autism is here to stay and may be considered a part of the diversity of the human gene pool," said Dr. Stephen Shore in an interview with Huffington Post.

Shore is the one of the first people with autism to join the board of directors at Autism Speaks along with Dr. Valerie Paradiz, who was appointed at the same time.

The organization's founders were actually the grandparents of a man with autism. And however well-intentioned they may have been, they've faced a lot of criticism and controversy over the years due in part to the fact that they were making decisions about how to spend their $60 million dollar budget without any real buy-in from the people they were purporting to help. (They also promoted the oft-debunked vaccine connection until as recently as 2009.)

"After ten years of telling us 'it’s time to listen,' Autism Speaks now visibly listening to people on the autism spectrum is a very good sign," Shore said in an interview with The Art of Autism.

Dr. Stephen Shore. Photo by Cindy Ord/Getty Images for Autism Speaks.

This shift toward more support-oriented language is just one small step in a major organizational transition.

There are certainly some skeptics when it comes to the changes Autism Speaks is making, too. And to be fair, the executive director of Autism Speaks, Megan Hoffman, was still talking about a "cure" as recently as October 7, 2016. So even though the official language has shifted in a better direction, it'll still take some work to change the organization's internal culture to go along with this new mission.

But if Autism Speaks can find a way use their vast funding and connections in a way that actually works, it could make a huge difference for people with autism and their families across the country.

Because neurodiversity means more minds put together — and even better things can come from that.

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