An isolated existence: Autistic teens battle hidden demons

“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.

Three Sixty Editor’s note: For privacy reasons, ThreeSixty Journalism is only using first names of teenage sources in this story.

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.”

FEELING ALONE

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.”

HELPING HAND

To learn more about the Autism Society of Minnesota’s social skills classes, including summer opportunities, visit www.ausm.org.

(Artwork by Mina Yuan)

  • This is an excellent article. I wasn't diagnosed with Asperger's until I was 42-years old. I had great difficulty in social relationships throughout high school, college (Macalester College in Saint Paul, MN), then later at a boarding school for ages 16 through 30 years in Norway (lots of sports, language classes, cooking classes, travels to different parts of Norway and Denmark). I was very awkward around women, and had about six sexual harassment complaints due to staring past or at women (and men) -- which is one component of symptoms. It didn't help that I didn't know that I was near-sided until my second year of college, into my mid-twenties. After ten years of therapy, I have mostly integrated, but have a difficult time speaking in person to women to whom I am attracted. As I enjoy writing letters -- and long ones, one acquaintance mistook my writing as head over heals in love with her. The topics included the financial industry, interviewing and finding jobs and keeping them before one turns forty, and a compliment on her character. As I think I've spooked her, even though we travel in a tight-knit group, I have given up on trying to have a friendship. It can be very trying at times because most of our society has not learned that imperfection to "our" degree isn't bad. I write much better than most, especially when I edit. I could care less about football and hockey -- deeming these the sports of idiots and self-abusing masochists, regardless of their previous or current academic life. Basketball, tennis soccer, skiing, cross-country, orienteering, and swimming are far more civil and easy on athletes' neurological systems and bones. What I do care about in people is that they are performing well enough to have pride in themselves, and to be happy with their achievements and down time. Microsoft and other companies look for Aspies because we focus very well on our subjects, for the most part, tend to be very helpful and collaborative in formal interaction, and we tend to be very loyal, non-violent. However, we are subject to a lot of bullying. I had death threats and numerous beetings at University of Minnesota in the late 1980's. The police at the University of Minnesota, as well as the housing serve and student affairs administrators and executives were without empathy or civility, citing that if I wasn't so different during that period of time, I wouldn't bring on the assaults. Later, when I finally found compassionate administrators who were new supervisors to the chief of police, and an aide to President Nils Hasslemo, policies and personnel began to change. Cause and effect? I don't know. But I do know that the three police officers who gave me so much difficulty and refused to assess written and recorded evidence of harassment and threats were replaced by new FBI trained officers. Even the vice president of student affairs, who had taken me aside for complaining about malfeasance and made me the bad guy in the drama, disappeared from the post. Cause and effect? Again, I don't know; but every officer and administrator with whom I had to deal with -- who failed to keep me safe from obstacles to my studies after I made a concerted effort to get well, were eith transferred to departments with less social interaction with young adults, or were completely absent from campus. In the end, in 1994, after I had learned that my girlfriend was raped when she was five years old by her nanny's fifteen year old son, gossip went around UMPD the security escort system, and to at least one dormitory's student staff, fictionally citing that I said that I had sex with young children. Still curious about that set of events, which they created a reason to have me arrested for disorderly conduct after I asked the security staff to stop walking with me given their increasingly disrespectful and arrogant tones, I was put in jail for a few hours. Fortunately, the deputies ket a close eye on everyone. When I finally asked to be put in a separate holding cell after midnight, because I was talkative and didn't want the other inmates to be kept awake by my nervous chatter, I was let go early, with the comment of one deputy being, "Mr. Peterson, we're going to let you go early tonight. We don't believe you did anything wrong. I'll be back in five minutes after I speak to my supervisor." The judge held the case for a year, then let it pass. I was never convicted. However, on the back page of the arraignment summary, the only thing that was given as notes for that evening was the following: "Mr. Peterson stated that he had sexual conduct with young children." a comment which I hadn't made to anyone for several months, and only, during that period to UMPD staff. This is an important story because it goes to show just how hostile people can become by knowing the name of a diagnosis of an eccentric person. My ill-feelings have been cleared up with UMPD and the rest of the University. The teaching was generally at an excellent level. I have my parents and childhood neighbors to guage the quality of teachig, as many were surgeons, chemistry department personnel and a director, cardiologist, humanities and language professors, a U.S. vice president, and a MN State Supreme Court justice. lived across the street and within blocks of my family. I knew them personally and/or through reputation and shared office space. Their casual placement in my path led me to believe that people should work together to create and maintain the kind of nation that the Preamble of the Constitution of the United States of America holds for us to read and interpret. t one time, my head was in the clouds and I was conceited. Having lived in poverty, now, for most of my life, I have dramatically come to my senses about people, and have become a Nichiren Buddhist (www.sgi.org), out of Tokyo from the 1930's (founded in the 13th Century C.E.); a very humanistic and non-mystical practice which teaches compassion, happiness, personal integrity, and personal responsibility. As for my autism, I still wrestle with it, and sometimes get caught on ideas, or caught up in fond friendships that have disintegrated over the years, as is typical-enough for most people, but with greater pathos than the typical person. I hope my essay was interesting and well written. I have not edited it. Please take an interest in peoples who have been stigmatized -- whether they have medical conditions like autism schizophrenia, Bi-Polar Disorder; or if they are from a different religious sect than what you have begun to feel accustomed to. Also, whether or not they live within the LGBT community; or whether or not they are from Iran or another Middle Eastern or Central Asian nation with whom we have either been cooperating on a military and diplomatic mission, or whether we have been fighting for a period of time. The richness of our nation is not only in our military might and educational institutes of higher learning, but in the wealth of cultures, then nuances within the various languages which we speak or hear, or even regardless of the propaganda and true news that we hear about our political actors. Let's cut stigma and endorse a renaissance into learning about one another and creating a great nation -- again, as China is quickly overtaking us on the financial front, and our leaders are now taking actions to control our personal capital through a new law called FACTA, which just went into effect last week. - by Barry N Peterson on Sun, 07/06/2014 - 11:35pm

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