Sat November 10, 2012
For Young Adults, Autism Diagnosis Opens Doors, Minds
Growing up, Jordan Howard always felt like an outsider. He had trouble making friends, and he felt awkward in groups. He says he felt like one of those misunderstood high school clichés. And he could never put his finger on why.
“I’ve always felt like there’s something I’m doing subconsciously,” Jordan says. “Like something I’m saying, and I don’t think that it’s a problem or anything. And I’m doing it, and people are going, ‘whoa, that’s weird.’ But I’m not picking up on it or something.”
Jordan says it seemed like people instantly disliked him. Other kids would bully him. Even his own brother and sister would pick on him. “It’s really kind of sad, but I’ve really just kind of learned to be alone.”
Jordan turned 22 this October. He lives at home in Federal Way. And up until earlier this year, he did spend most of his time alone. But then he learned something that totally changed his perspective.
“It was like a door was open,” he says, “kind of an enlightenment.”
A First, After 22 Years: A Friend
Jordan had been suffering from depression, and one day his regular doctor sent him to a therapist. That therapist diagnosed Jordan with Asperger’s syndrome. Jordan says it was like things just clicked. “I was just like, ‘OK, that explains why this happened to me when I was younger. Or why I did this. Or why I do this.’ It was kind of explaining all of my little quirks.”
Like his fixation with British rock bands. Or why he’s bad at giving compliments. Asperger’s syndrome is a mild form of autism. Autism is a range of developmental disorders that affects the brain’s normal development of social and communication skills. Symptoms range from mild to severe. That's why it's called a spectrum disorder. Jordan’s discovery was a revelation. After all those years assuming he was different than his peers, to have it confirmed was a relief.
“It was this huge sense of relief that, OK, it’s not that I’m strange. There is actually something wrong.”
To help him sort his thoughts, Jordan’s psychologist suggested he join a social group she hosts for young guys with autism spectrum disorders. Jordan was skeptical at first. He had never fit into a group before in his life. But he decided to give it a shot. On the first day, he showed up wearing a T-shirt with the logo of a British rock band, Joy Division. He walked in the door and a guy named Dorian Hinkle said, “You like Joy Division? Then you must know New Order.” And Jordan said, “Then you probably know the Smiths.”
“It was just like, instantly, right there we just became friends. And I’ve never, ever had that before,” Jordan says.
Range Of Symptoms Wide And Diverse
Jordan had finally found a group of friends he could identify with. And over the course of the summer, Jordan and Dorian became closer friends as they helped manage a tent together at the Federal Way farmers market.
One day I visited their tent as they prepared for a non-verbal person to work with them for the day. Dorian was excited, but Jordan and another one of his friends with Asperger’s, Alex Brenner, aren’t so excited. Alex says he sometimes gets frustrated working with non-verbal people. "It’s really hard for me to put myself in their shoes," he says. "Which is ironic since I do have a disability myself.”
But the range of severity between different autism spectrum disorders is huge. For example, Alex hopes to get accepted to the University of Washington. But for Rolando Elias, the 19-year-old non-verbal person coming to work with them, the hope is to get him out of the house and into the community.
As I talk to Alex and Dorian, they study note cards. On the top is printed, “Working With A Non-Verbal Person.” Below is a list of 10 bullet points. The last one is in bold: “Keep in line of sight constantly and redirect if he tries to run.” Alex is nervous about how customers might react.
“They’re going to probably, like, raise their eyebrows or maybe be discouraged,” Alex says. “But for those who are at least open minded enough, I just hope they see him more as a person than kind of a distraction, or just somebody who can’t do anything.”
A Lesson In Acceptance
Alex isn’t the only one with questions about how people with autism spectrum disorders will be viewed by the public. Experts say the number of young adults leaving the school system will likely become a wave in the next decade. And no one is quite sure how much they’ll be able to participate in public life. It’s also hard to tell whether they’ll be accepted and supported by other people with autism.
Rolando’s first visit to the farmers market goes well, but when he visits a second time, Alex is mean to him. Alex gets frustrated and orders Rolando around, talking down to him like a misbehaved child. Alex is uncomfortable talking about it later.
“I’ve always worked around people who were disabled who could talk,” Alex says. “To not have somebody not respond to you is really awkward. So unfortunately I just ignored him and just — God, I’m ashamed.”
Alex apologized. He also dug out some old toys he used to play with and gave them to Rolando. Alex says he should’ve realized non-verbal people express themselves differently and that he was treating Rolando unfairly.
“Just because they can’t talk to you doesn’t mean they’re stupid,” Alex says. I ask if that's a familiar feeling for him — having someone misunderstand him. “A little,” he says. “But I didn’t really see the bigger picture back then. Like I do now.”
Rolando and Jordan's stories continue in KUOW's Coming Of Age With Autism.
Funding for Coming Of Age With Autism was provided by the KUOW Program Venture Fund. Contributors include Paul and Laurie Ahern, the KUOW Board of Directors and Listener Subscribers.