Student Panelists Celebrate Neurodiversity


Ben Shepherd, Photo editor

Steve Silberman gives a speech on his book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity as part of the Office of Disability Services’ Autism Week events. This year’s themes were neurodiversity and self- advocacy.

Adam Gittin, News editor

A student-led panel, a book presentation and a guest lecture about poet and author Tito Mukhopadhyay, as well as several inter-department gatherings, comprised the events of Oberlin’s Autism Week.

The week’s events will conclude with today’s talk by Ralph Savarese, “Reading Moby Dick with Tito Mukhopadhyay:

Perception, Sensory Processing and Unrecognized Competence in Autism.” Savarese, an English professor at Grinnell College who authored Reasonable People: A Memoir of Autism and Adoption, and Mukhopadhyay, an autistic writer, discussed Herman Melville’s sprawling epic via Skype for 17 months across 2012 and 2013 — Mukhopadhyay typed his comments in the sidebar while Savarese spoke.

During the talk, Savarese will also recount his journey with Mukhopadhyay in the fall of 2014 to Arrowhead, MA, where Melville wrote much of Moby Dick, and to Mystic Seaport, CT, to see the world’s oldest wooden whaling ship.

On Tuesday, Steve Silberman, OC ’79, came to campus to discuss his bestseller, NeuroTribes: The Legacy of Autism and the Future of Neurodiversity, which investigates the history of conventional thinking about autism and promotes the appreciation and empowerment of people on the autism spectrum.

Autism Week was centered on the themes of neurodiversity and self-advocacy, which involve accepting and celebrating people who think differently from the norm and ensuring those voices are front and center in the conversation about autism.

College junior Cassie Dean, College senior DJ Savarese, the son of Ralph Savarese, and Alex Rosen, OC ’15, delivered the opening panel discussion Monday in Wilder Hall. Together, they sought to eliminate the social stigma that people with autism are unintelligent, inarticulate and unable to achieve success in adulthood.

“A popular adage of the disability rights movement is, ‘nothing about us, without us,’” said DJ, who types through a text-to-speech program to verbally communicate. “I am on this panel because I think self-advocacy is really important, and I am hoping to help others understand that being neurodiverse is seriously very helpful and not something to be ashamed of.”

In 2013, the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition reclassified several similar neurodevelopmental disorders to fall under the umbrella of the autism spectrum. The change represented a more accurate and consistent way to diagnose people with autism-related disorders along a single continuum.

Still, the panelists discussed how the general conversation surrounding autism tends to emphasize the deficits that are associated with Autism Spectrum Disorder, such as difficulty socializing and sensory overstimulation.

For example, Autism Speaks, one of the most widely recognized autism charities, has been criticized for spending little of its total budget on services for people on the autism spectrum and their families while pouring funds into marketing and research, much of which is aimed at “curing” autism. According to Autism Speaks’ 2014 audited financial statements, less than 4 percent of the organization’s expenditures went toward grants for families, while more than 40 percent went toward advertising and donated media and more than 10 percent went toward research-based grants and awards.

While the panelists acknowledged the challenges that many on the spectrum — themselves included — face every day, they said that they wanted to refocus the discussion and instead highlight the positive aspects of being autistic.

“I’ve had autism my whole life” Rosen said. “After what I went through, I wanted to make sure that others like me had a chance to succeed. I truly recognize their potential. If we open up to them more often, we could really see it.”

Rosen, who built the LEGO replica of Mudd library that sits at the building’s entrance, has worked several internships for the federal government, including for the Motion Picture Preservation Lab at the National Archives, the National Museum of the United States Navy in Washington, D.C. and the Smithsonian’s IT division. He will begin attending the University of Maryland’s Masters of Information Management program in the Fall.

“I just want to urge you, see things from the other person’s point of view,” Rosen said. “Instead of focusing on the negatives, stop and take a look at what they’re doing good and let that define your perception of them.”

Dean, who is majoring in Neuroscience and Biology and minoring in Chemistry, said that being autistic often makes socializing difficult for her. Still, Dean said that she is able to take a valuable perspective on her research.

“My brother has autism, which I’ve known my whole life, and then, within the last year or so, it’s come up that I also have autism,” Dean said. “It’s something I research and want to spend my life researching and helping children with.”

Many people on the autism spectrum are able to pay meticulous attention to details in ways that neurotypical people cannot. “Neurotypical” is a term originally coined by the autistic community to refer to people not on the spectrum.

“I’m really good at seeing patterns,” Dean said. “That really has helped me with my research because I deal with a lot of numbers. I’m able to an alyze … all these numbers and then pick out patterns that otherwise may have gone unnoticed.”

Dean is particularly interested in the relationship between gender and autism and said that this is a topic sorely lacking in research. She added that researchers need to transcend binary-specific analyses and investigate how autism affects people of all gender identities.

According to the Centers for Disease Control and Prevention, autism is upward of four times more prevalent in male-assigned individuals than those who are female-assigned. However, Dean said that the disparities between how female-assigned and male-assigned children are raised can lead to certain biases, even among medical professionals, that heavily affect diagnoses.

“There’s such a social stigma attached to autism that it can make putting yourself out there, and putting yourself under that label, very difficult,” Dean said. “But at the same time, someone has to do it. Someone has to get it across that autism is not what the general perception of it is — it’s so much more than that. It doesn’t mean we’re dumb, it doesn’t mean we’re unable to do things that other people can.”

The panelists agreed that speaking about their experiences is one of the best ways to educate neurotypical people about the complexities of living with autism and defeat the stigma against those on the spectrum.

“I am sometimes sad about being autistic,” DJ said. “It makes me so anxious, and I hate being stuck in a body whose nervous system doesn’t work well. At the same time, I am starting to get stuck less frequently now, and sometimes autism is a gift.”

DJ, who is a scholar-fellow with the Autistic Self Advocacy Network, said that his perspective allows him to write new and fresh poetry and empathize with people on a different level than what the average neurotypical person might experience. He uses poetry, documentaries and live performances to communicate his message.

“I think of self-advocacy as a group endeavor more than an individual endeavor,” DJ said. “As a scholar-fellow, I try to educate people and disrupt myths about autism by using reason, legislation and petitions.”

Rosen also works to defeat the social stigma of autism in society at large. He recently went to Capitol Hill to meet with Maryland Representative Chris Van Hollen to discuss perceptions of autism, especially among law enforcement and emergency service officials. Van Hollen is a cosponsor of Kevin and Avonte’s Law — a bipartisan bill named for two boys with autism who died after wandering away from their caregivers — which would provide funding to equip law enforcement officials with the training they need to better assist people with autism or similar conditions that may make them prone to wandering. The bill passed through the U.S. Senate Judiciary Committee April 14 but still awaits approval in the House.

When the subject of cure development arose, the panelists made their cases for why people on the spectrum are not in need of a cure.

“Who knows?” Rosen asked. “What if we do find a cure that manages to get rid of all the negative aspects? We would still be afraid that not only the negative aspects [would] go away, but also any potential positive aspects.”

Rosen said that, while a cure would likely help many people on the spectrum become more independent, focusing on educating neurotypical people could similarly help.

“There’s no such thing as a cure,” Dean said, adding that the causes of autism go way beyond genetics and are too broad to pinpoint. “Curing someone, what would that even mean? You’d have to change their entire circuitry to do that.”

Rosen agreed, and also addressed how difficult it could be to get an autistic person’s consent if curing the disorder ever became a reality.

“If there was such a thing as a cure, it would have to be tailored to individual people, and we would have to get their voice in order to make the final say,” Rosen said.

DJ had a succinct response to the question of a cure: “It assumes I am not worthy of life.”

“I’m very happy with who I am, and I wouldn’t change being a person with autism for the world,” Dean said.

“Don’t let fear affect your perception of people on the spectrum,” Rosen said. “We have limitless potential. It’s just that society focuses on all the negative things about us and it doesn’t allow us to really, really shine.”

A committee of students and staff members from the Office of Disability Services organized Autism Week. Jane Boomer, director of the ODS, said that they met every week starting in February to come up with this year’s theme and plan the events.

Boomer said that the students on the committee who have autism wanted their voices to be heard, so the committee members all agreed to focus this year’s Autism Week on neurodiversity and self-advocacy.

Last year was the College’s first Autism Week, which the ODS plans to continue holding annually. Rosen was instrumental in starting Autism Week last year, which included a similar panel, three movie screenings and a bowling night. Next year, the committee members hope to bring a professor with autism to campus to speak.