An isolated existence: Autistic teens battle hidden demons
Editor’s note: For privacy reasons, ThreeSixty Journalism is only using first names of teenage sources in this story.
“Call me crazy, but I hear things that torture me on an unrelenting basis that never, ever, ever shut up. And they’re basically the same voices that I was surrounded by in class that were whispering about me.”
At first glance, 16-year-old Ely is both charismatic and gregarious. He speaks with a confidence bordering on bravado.
However, this acts as a varnish hiding the difficulties that at times stifle him.
One could see tufts of these hidden struggles as he contemplated relating an incident that still haunts him. It’s a hesitation that perhaps epitomizes autism’s effect on his social interaction.
In the seventh grade, around the time Ely was diagnosed with Asperger’s syndrome, he fell in love with a classmate. A typical crush. Except, as he attempted to share his feelings, he wasn’t aware of the effect autism would have on his ability to be so open and honest — and how that would also affect the girl in question.
Looking back, Ely said he realizes that he simply did not know how to appropriately express himself. But at the time, all he knew to do was say “I love you” as many times as possible.
“I didn’t understand it, and while she didn’t return the love, I couldn’t see it. So I just continued pursuing my ambitions,” he said. “Eventually, things kind of went wrong and rumors started being spread around about me …
“I heard people whispering about me at the back of my class … It’s sort of like living your worst nightmare.”
Annaliese, who also has Asperger’s, is his girlfriend. They met after attending classes provided by the Autism Society of Minnesota (AuSM).
Like Ely, she has also suffered a burden of bullying caused by the condition.
“Recently, someone called me pathetic because I couldn’t do something that everyone else could do,” she said. “(People think) that autistic people are freaks. Some think we’re stupid. There are a lot of us that are really smart … It’s just stereotypes that we’re someone that they can be condescending to.”
The nature of Asperger’s — named after the doctor who diagnosed it — can make the already vulnerable period encompassing teenagehood even more trying. Though it’s considered a higher functioning form of autism by medical experts, typical Asperger’s symptoms include: Difficulty initiating and maintaining conversation, struggling with eye contact and body language cues, not being able to make friends easily, developing odd and repetitive movements, maintaining specific rituals, and developing intense — often obsessive — interests.
It’s why Ely and Annaliese said they value solitude more than anything else. The latter recalled that “When I was little, my parents said that I was always off by myself. I was playing by myself … Ever since I was little, I was in my own world.”
Ely isn’t much different, saying that, “I lock myself in my room and do absolutely nothing. Lately I’ve been forced to come out … (I’m) still kind of procrastinating at the more important side of my life … I often believe that (isolation) is viewed as something you should avoid, but I relish in that. Internally, I rebel (against the idea of socializing) but I’m very passive, so I just go with it.”
Their tendency to detach often manifests in alienation from their peers. For instance, Ely said he often zones out and can close himself off from everything else happening around him.
“You’re in this stage of serious contemplation, and then someone snaps you out of it … It’s for that reason I don’t have many serious connections with people,” he said.
As for Annaliese, her Asperger’s has also proved to be a challenge when it comes to schoolmates. But in a different way.
“The first two girls I told at school … they looked at me and said, ‘No way, you’re not stupid enough. You can do a lot of stuff. You’re making it up.’ There’s different forms of autism, it comes in different levels. I stopped telling people after that … And then as people started questioning … why I was so different, then I’d just tell them I have autism.
“(They say) ‘I never would have known.’ You can act so normal, just because you can pick stuff up on how to act. And then you’d stay quiet, so you don’t make a mistake. They’ll never guess.”
EDUCATION AND OUTREACH
Nora Slawik, AuSM’s director of education, has played an active role in removing the stigma and misconceptions that surround autism and supporting those that struggle with the disorder. She’s especially proud of AuSM’s Saturday social skills classes, which bring about 10 autistic kids to Como Zoo in St. Paul to learn improvisation skills — or how to respond and react appropriately in social situations — while in a supportive environment.
“We find that (the class) builds self-confidence and better self esteem. They feel better about school overall, and they are coming to a place on Saturday that they feel good about,” Slawik said. “Because school is not an easy place. And at home may not be an easy place. So we’re creating an environment where they can feel good, have that growth and yet learn a lot, too.”
Slawik said it’s especially taxing for young adults with autism as they enter adulthood. Social deficits can affect the ability to go to college, get a job interview, and keep a job — whether it’s “eating lunch with people, following the routine or getting along with your co-workers.”
“There are a lot of kids out there that are in their basements right now playing video games when they could be doing this. The statistic is two years out of high school, students on the spectrum are either unemployed or not in higher education. So if they’re two years out of high school, not in a job or not in college, where are they? Playing video games in their parents basement,” Slawik said.
“Motivation starts to play in that, too, as they get older. Any workshop we do with the word motivation, we get a bunch of people, because there is a perception that there is a lack of motivation — when actually, it’s that anxiety where they are so afraid that it paralyzes them from making a move.”
TAKING OFF THE TRAINING WHEELS
Annaliese has gained a newfound confidence from the sessions. Having had experience saying “something that turned out wrong,” she feels more comfortable working on social skills around others like her.
“I know they’re going through something I’m going through, and they won’t look at me and judge me,” she said. “It makes me feel better around people who may judge me, because I’m growing into not caring as much as I used to.”
As for Ely, he feels as though the classes have done their job. He’s ready to move on.
“I was struggling to grasp that this is real life. This is the world you live in, you have to adapt. And I was truly immersed in my own realm,” Ely said. “I have improved past that point. It’s like taking off the training wheels on a bike.”
Slawik’s mission of creating safe spaces for teens like Annaliese and Ely is a multifaceted one that requires more than just individual effort for those who are autistic. She notes the importance of society’s behavior toward the condition itself, and how all should strive to show empathy to those who struggle with basic interaction.
“When I go to a room and I am doing a training (session), I will say, ‘How many of you know someone with autism?’ Most of the hands go up these days. So I think there is a bigger awareness in general,” Slawik said.
“However, what many people don’t know is how to respond appropriately, that the biggest thing is just being kind. (Teens with autism) are not trying to act out. Be accepting. Be kind to them.”
To learn more about the Autism Society of Minnesota’s social skills classes, including summer opportunities, visit www.ausm.org.