CAST members share their personal experiences on the autistic spectrum

As a part of the Autism Week by the Coalition for Autism Support at Tufts (CAST), juniors Aaron Herman, Emma DiFrancesco and Justin Robbins shared their personal experiences of being on the autism spectrum in an event titled “Autism 101(23).” This was held in collaboration with Theta Delta Chi (123) on Thursday, March 31. Around 50 people attended the event in the Crane Room, which was moderated by Lauren Jacobs, vice president of CAST.

“CAST is a support and advocacy group by and for autistic students,” Jacobs, a junior, said, introducing CAST and its mission to the audience.

Jacobs shared the basic symptoms of autism listed in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, such as differences in social interaction and repetitive behaviors, before calling upon the panelists to share their personal experiences with autism.

Robbins was the first one to share his story, explaining that from a young age, he developed a passion for astronomy.

He noted that his peers in school perceived him as the “weird smart kid." If anyone asked Robbins how he felt, he said he would reply with a “1202.”

“It was easier to explain myself with a 1960's computer code rather than words,” Robbins said.

He also explained that he was bullied endlessly at his school and summer camps and noted that he could not participate in everyday conversations or express what was on his mind, even with friends.

“[Friends] were just a nice incidental bonus,” Robbins said. “I was more curious about learning more and more, rather than building a relationship with them.”

Robbins shared that his parents were always supportive of his interests, which encouraged him to follow them enthusiastically. After elementary school, he said that he started developing more socially.

“I came to know that not everyone likes astronomy, and so I started listening to others," he said, noting that his social experience in college has surpassed his previous schooling experiences.

“There are a lot of people out there, some of them with similar interests as yours and will respect you for it,” Robbins said. “I made more friends at my orientation than during my four years at [high] school.”

Having found a variety of people with both unique and like-minded interests at Tufts, Robbins concluded that being passionate about something, in general, is a good thing.

Herman, who was diagnosed with Autism Spectrum Disorder at the age of six, next explained that he had an obsession with atlases and maps at an early age.

“My relationship with autism is quite complicated,” Herman said. “My experience with autism now is quite different from that when I was young.”

Herman recounted a Halloween party where he dressed up as Hodor, a simple-minded character from the Game of Thrones, who was capable of saying only one word, ‘Hodor.’

“Since I was always talking about Hodor, I couldn’t engage in meaningful conversations or even initiate a conversation,” Herman said. “People who knew about Hodor were more understanding of my behavior, but even they weren’t easy for me.”

This Halloween party was Herman’sfirst prominent social encounter with others, he said.

Herman shared that even if people accepted his company, he could not keep up with their conversations, or process what they were saying, even if those people genuinely wanted to be helpful.

“People in middle school initiated very basic small talk with me,” Herman said. "It was easier, more predictable, but quite boring.”

According to Herman, people who knew that he has autism reacted in more understanding ways, but Herman still could not tell them what he wanted from them.

“I am never able to stop being autistic, and frankly, I don’t want to,” Herman said. “I feel my social skills, around which this world greatly revolves, are lacking, but there are also certain things I understand better than other human beings. Autism is portrayed as a tragedy; it really is not.”

Herman expressed hopes for others to adopt a similar understanding to autism as his understanding.

He also expressed concerns and apprehensions centered around autism, especially expectations regarding job interviews where making eye contact is considered extremely important. Herman admitted that while it is difficult to lead a life with an autism diagnosis, a lot can be done to alleviate the problems faced by the autistic.

“People not on the spectrum can make things easier,” Herman said. “I really don’t see that as much as I would like."

DiFrancesco next explained that her specialized interest in ballroom dancing helped her through her autism journey.

She shared that she was diagnosed with Asperger’s Syndrome, a high-functioning form of autism, at the age of two. She was not allowed to talk about her diagnosis outside of family, she said.

“People back then didn’t know much about autism,” DiFrancesco said. “My parents didn’t want me to be treated differently.”

DiFrancesco revealed that she did share her autism diagnosis with a few friends in school and was also able to make a few neuro-atypical friends because of that.

“I started telling people my ‘deepest darkest secret,’ despite my parents’ wishes,” DiFrancesco said. “It helped me ‘fix’ my camp friends.”

DiFrancesco shared that, although she received a "girl scout" training to accept differences in other people, she could not accept differences in her own self. Having a tough time socially, both in her boarding school and high school, DiFrancesco explained how college provided her with a hugely liberating social justice environment once she arrived.

“I found autistic community on the internet, and it made me realize how my journey was so unique,” DiFrancesco said. “This journey of self-acceptance is a bit challenging, but I started acknowledging similarities between myself and other neuro-divergent friends.”

DiFrancesco expressed gratitude and happiness over meeting her first female autistic friend during a trip to California.

"Now that I know so many people on the spectrum, I know how to treat other people and not let other people mistreat me," she said. "It’s really nice to know how to protect myself and protect others.”

The event culminated in a question and answer session with the three panelists. Guests asked the CAST members ways in which neurotypicals can be more accommodating of the autistic, why CAST and 123 decided unanimously this year not to donate to Autism Speaks and how people in the autistic community prefer to be referenced.

“We prefer to be known as the autistic community,” Robbins said. “Calling anyone as a ‘person with autism’ is really as if a part can be removed from us; now we wouldn't say 'people with gay,' would we?”

DiFrancesco believes that trying to separate this part of autism from the autistic can actually lead to their trauma or physical harm.

“It is not a healthy approach to address autistic people as ‘people with autism,' as if they are people with cancer or some other disease,” Herman said.

The panelists also addressed their concerns and sentiments about Autism Speaks, an organization which aims to increase advocacy, research and awareness surrounding autism, according to its About Us page. Robbins noted that this is the second year CAST arranged this event, after its joint decision with Theta Delta Chi to no longer donate to Autism Speaks.

“They are a renowned organization, yet they term autism as a ‘global health crisis’ in their mission statement,” DiFrancesco said. “They say that something is missing in all of us, [the autistic community].”

According to Robbins, Autism Speaks terms autistic people as if they have an affliction worse than HIV.

“Since they don’t have any autistic people in their structure, they push very, very hard toward the idea of a cure.” Robbins said. “The community is quite clear on that, we don’t want that.”