UPDATED: April 2, 2018 at 5:06 p.m.

As a student at Tufts University, Justin Robbins remembers a girl speak on campus as a member of an autism awareness organization. Robbins found her description of autism to be patronizing and leaving out the perspective of autistic individuals.

When he approached her and told her he was autistic, Robbins said she told him that she wasn’t referring to “your kind of autism” — as if she was speaking to a puppy, he said.

“Her words are saying, ‘You’re not really autistic, I don’t think you’re autistic.’ But her tone is saying, ‘I definitely think you’re autistic,’” he recalled.

Robbins, 23, was diagnosed with autism spectrum disorder during his junior year of high school. In March 2017, he gave a TED Talk on autism. Now, he is a first-year graduate student in the biology department at Syracuse University.

Autism is becoming increasingly prevalent in the United States, and students on the spectrum at SU are working to build community and spread awareness. Social media has helped people with ASD engage, and students not on the spectrum are working to educate themselves by organizing events, including an upcoming autism awareness 5K.

The Centers for Disease Control and Prevention estimates one in 68 kids in the U.S. are on the spectrum as of March 2014 — the most recent statistic provided. That number is a 30 percent increase from 2012. But Robbins thinks the numbers are hovering around one in 40 today.

“Now, there is a term (for when) people start noticing and can be officially diagnosed,” he said. “It’s new that we have words for it, and more people are realizing that word is appropriate for them or someone close to them.”

The work of Hans Asperger, an Austrian medical theorist who studied mental disorders, wasn’t translated into English until 1991. In his work, Asperger defined ASD as a cognitive disability, mostly characterized by social difficulties and large interest in particular areas, Robbins said.

Robbins added that when he was diagnosed with autism, having a word to describe how he had felt his whole life was affirming.

“There’s this idea of protecting us from knowing, but knowing you’re autistic is empowering,” he said. “Not only is it a part of who you are, and you deserve to know, but it’s helpful just in so many ways.”

Autism isn’t a new thing, Robbins said, and autistic adults have always been a part of society. Robbins said the biggest misconception about autism today is calling it a disease, because that implies it’s something that can — or should — be cured.

“We don’t want autism to be ridden. We don’t want to be cured,” he said.

Robbins said there is not a version of himself that could ever exist that was not autistic. He uses the word autistic as an adjective, and said having an understanding of his own strengths and weaknesses helps him to understand his body and process things like sensory overloads. When these overloads happen, he’s able to tell himself that it isn’t the end of the world and that it will be OK.

Though there are obstacles in his everyday life, Robbins does his best to stay positive.

“Autism is not a tragedy. It’s not a sad narrative,” he said. “There are plenty of challenges, I know, but there (are) lights at the end of the tunnel.”

Technology has helped people with ASD communicate and socially engage, Robbins said. He used the example of social media, which he said is a huge advantage for people on the spectrum who are non-verbal because they can type. Robbins gave the example of Amy Sequenzia, a successful advocate who is non-verbal and uses technology to communicate.

Cleo Hamilton, a second-year sport management major at SU, has used Facebook and Instagram to show his friends and family how well he’s doing at school. Hamilton’s work was published in the online magazine TASH Connections in January. His posts were published in the magazine, which is an international leader in disability advocacy, because they documented his freshman year at SU.

Hamilton uses social media to spread awareness about autism.
Hieu Nguyen | Assistant Photo Editor

“I want to prove that I am continuing (to stay) focused on my classes so I can finish school here on campus and graduate,” Hamilton said. “Because I want to prove to myself how happy I am — a positive attitude, not a negative attitude.”

Michael Scholtz, who is also a sophomore sport management major at SU, loves Syracuse sports more than anything. Scholtz said he enjoys spending time outside and aspires to be a coach for SU Athletics.

Scholtz wants to increase autism awareness on the Hill and said he hopes to get more students involved in InclusiveU so the community can learn about autism and why it’s important to be aware. InclusiveU is an initiative at SU to help students with intellectual and developmental disabilities integrate into all aspects of college life.

To help spread autism awareness, members of Brewster, Boland and Brockway Halls’ Residence Hall Association are organizing their first 5K walk for autism awareness on Sunday. All proceeds will go to Best Buddies, a global nonprofit fostering one-on-one friendships for people with intellectual and developmental disabilities.

Matt Frisch, a freshman studying entrepreneurship and emerging enterprises and real estate in the Martin J. Whitman School of Management, is one of the organizers of the 5K.

“(We’re) trying to make it as inclusive as possible, and it’s just a nice thing to do,” he said. “It’s a widespread thing, and probably a lot of people know someone with ASD.”

The 5K organizers are working to make the walk inclusive by limiting loud noises and not playing music at the run. The route also doesn’t include stairs in an effort to be conscious of accessibility.

Robbins is building community through the autistic student group he founded earlier this year. The group, called On The Spectrum, is a confidential space for autistic people to come together.

He founded a similar group at Tufts but said it took months to get moving because there was a lack of comparable groups there. At SU, though, since other groups exist for similar needs, he was able to gain traction fairly quickly with On The Spectrum.

Robbins said he wants the space to be used as a judgment-free environment for talking about the experiences he and other people with ASD have “on our own terms.” About eight to 10 people are currently in the group, he said.

For Robbins, community is important, as it lets him know he’s not alone.

“We’re proud of who we are, and we always try to, like everyone, try to improve weaknesses and build on strengths,” Robbins said. “We don’t want to be cured, we don’t want to be fixed. This is who we are.”

CORRECTION: In a previous version of this post, due to an editing error, Cleo Hamilton was misnamed in a photo caption. The Daily Orange regrets this error.

Published on April 1, 2018 at 10:47 pm

Contact Myelle: malansat@syr.edu