This is the second part of a series about students on the autism spectrum at Tufts. To read the first part, click here.
For Aaron Herman, Rachel Bennett and Justin Robbins, three Tufts students with autism spectrum disorders who are members of the Coalition for Autism Support at Tufts (CAST), the main challenges at Tufts have proven to be social.
Herman and Bennett find parties difficult to navigate, as the loud music and large numbers of people can be very overwhelming. Bennett, a senior who has sensory sensitivities, also said she avoids Dewick Dining Hall at open block and carries earplugs with her just in case.
Herman, however, acknowledged that his academic abilities are part of what has allowed him to thrive at Tufts. Neither Herman nor Robbins, both sophomores, receive academic accommodations from Student Accessibility Services (SAS).
According to SAS Director Linda Sullivan, students who meet the official guidelines of having a disability under the Americans with Disabilities Act must register with SAS, where they begin consultations to determine which accommodations they will receive. She said that the office receives students with everything from learning disabilities to mobility impairments to chronic health conditions, and offers accommodations ranging from alternative residential arrangements to extended time on exams.
“We want to create an equal opportunity for students to be successful, but the students’ level of success is entirely [dependent] on themselves,” Sullivan said.
Sullivan said that the office has seen a significant growth of students registering in recent years, which suggests that students with disabilities are becoming more proactive in seeking out accommodations, regardless of stigma.
Bennett has anxiety and depression, conditions that are comorbid, i.e. often found in conjunction, with autism. She receives extended time on her exams, and she has the option to take them in a distraction-free environment.
Last semester, she had a misunderstanding with her taikwondo coach in which he interpreted her actions as disrespectful, but did not communicate with her about it. After talking, Bennett and her coach were able to work out a resolution.
“My coach was saying that I have a hard time looking at people from their perspective and thinking about what they’re feeling at the moment,” she said. “And usually I don’t blame my issues on autism, but in this case [he] just described my diagnosis verbatim.”
Robbins said that he has faced mostly ignorance and misunderstanding, rather than overt discrimination, when it comes to his autism.
“I would consider myself more or less ‘out,’ because I do feel that without major repercussions to myself, I am able to be openly autistic,” he said.
However, Bennett pointed out that she, Herman and Robbins constitute the bulk of autistic students who are “out of the closet” at Tufts, and that the three of them make up the core of CAST. They hope to be able to reach more students who may not yet be comfortable in their autistic identities, as well as bring greater awareness about autism to the Tufts community.
Robbins initially started CAST, with the help of SAS and the LGBT Center, as a closed, confidential space for autistic students to find support in each other and “act autistic.” According to Herman, this meant a “free pass to any faux pas committed,” as well as allowing for stimming, short for stimulation, which refers to the repetition of physical movements or touching of a sensory object as a means of relaxation.
However, the students decided together that in order to let the group grow, they had to include students without autism as well. According to Bennett, the group decided to alternate each week between internal discussions about having autism and wider educational events.
CAST also holds open events, including a screening of two episodes of “Star Trek: The Next Generation” (1987-1994) that featured characters with social disabilities. They hope to begin holding fundraisers as well, and are actively seeking more members in order to become an officially recognized club.
However, CAST is not the only student group related to autism at Tufts. Junior Colin Halvey founded a group called the Neurodiversity Club, which aimed to create a community for students with neural disorders such as autism, attention deficit disorder (ADD), attention deficit and hyperactivity disorder (ADHD), dyslexia and dysgraphia. He explained the concept of neurodiversity as understanding these conditions to be “not so much a debilitating disease, [but] simply a natural variation in the way we process that results from variation in the human genome.”
“Someone with dyslexia, for example, is no more inflicted with a disorder than someone who uses her left hand,” he told the Daily in an email. “In a world built for people who are right handed, life is naturally going to be more difficult, but these difficulties are very often systemic rather than implicit.”
“Things like Asperger’s and ADHD and Tourette’s aren’t things we should be trying to cure and pity,” Herman said of neurodiversity. “We should be looking at these people with minds that are different from the norm that contribute to society in ways we can’t necessarily, that add to how interesting our world is.”
However, Halvey mentioned that it has been difficult to maintain this community, mainly because involved students often choose to pass as neurotypical rather than face social stigmas, as their conditions aren’t immediately apparent.
“Since they are often seen as shameful, it is easier for most students to just continue with their lives and not admit it, rather than actively express it and have to assume publicly all the connotations that come with the label,” he said.
Last year, junior Shannon McHenry founded a Tufts chapter of Autism Speaks, a national organization that seeks to raise funding for “research into the causes, prevention, treatments and a possible cure for autism” and to “bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis,” according to their mission statement.
McHenry, whose brother is on the autism spectrum, aimed to unite the Tufts community surrounding autism, including students on the spectrum, students with siblings on the spectrum and faculty and graduate students researching the condition.
Robbins and other students with autism participated in the chapter at first. However, they ultimately left the organization due to fundamental disagreements with the organization’s goals. Robbins said that he did not want to be part of fundraising for a cause he does not believe in.
“We don’t need to or want to be cured,” Robbins said. “We do not want to be changed, to be fixed, to be as if we weren’t autistic, because there’s no such thing as a non-autistic version of me. We should help make autistic people adapt and prosper in our society, but the society also needs to reach out halfway.”
Robbins’ stance reflects a broader, national controversy surrounding Autism Speaks. Some accuse Autism Speaks of dramatizing autism as a grave illness that requires a cure — which only furthers negative stereotypes and social isolation — rather than as an identity that requires social and systemic inclusion.
“Their main goal as an organization is to raise money, and the way they get people to donate is to talk about autism as an epidemic [with] the rates skyrocketing,” Herman said. “That … spreads negative knee-jerk reactions towards autism that really undermine our goals, which are for our communities to accommodate us and understand us better.”
Others, including McHenry, defend the organization as pursuing crucial research that can make concrete improvements in the lives of people with low-functioning autism. According to her, the work the organization does is highly important to the parents of low-functioning autistic children.
Robbins, however, counters that there is insufficient focus on hearing the voices of autistic people themselves. According to a release by the Autism Self Advocacy Network, only four percent of Autism Speaks’ budget goes toward Family Services, or actual steps in “improving the quality of life of autistic people,” while 44 percent goes toward research. In addition, there are no autistic people on Autism Speaks’ Board of Directors.
“A lot of people think people with autism can’t speak for themselves, and that’s not true, clearly,” Bennett said.
McHenry also maintained that while Autism Speaks’ strategy may be problematic, it is necessary to achieve its goals and get donors to empathize.
“Whether or not they use the word ‘cure,’ they’re going to need to make it dramatic in order to get the marketing out there,” she said.
While McHenry still supports Autism Speaks as a national organization, she has recognized that it does not meet the needs of the autistic community at Tufts, and is in the process of shutting down the Tufts chapter.
“While it’s disappointing in some ways, it’s taught us so much about what the autism community here needs,” she said. “I think bringing it back to the Tufts autism community and how it can help its own is much more important to our people here.”
Person-first versus identity-first language is another controversy within the disability community. Some, including Sullivan, maintain that it’s correct to say “people with autism” in order to distance the person from the medical condition.
“If you talk to anyone in education or psychology or clinical mental health training programs, they’re all going to tell you that person-first language is one of the ways we help to destigmatize the ideas or images around disability,” Sullivan said. “If [identity-first language] is what the student feels is appropriate, I understand that and completely support that, but I’m not necessarily going to change my process.”
However, many, including Robbins, have reclaimed being called an autistic person as a vital part of their identity.
“To say a ‘person with autism’ implies that it’s some sort of condition, and that you can just remove the autism from a person,” Robbins said. “[CAST is] trying to promote the idea of autism not as a disease, but as an identity, much like race, gender, sexual orientation [are].”