Students Discuss Controversy and Activism of Autism Speaks

Paul Morris started his involvement with Autism Speaks U — Fordham University (ASUFU) in 2013. Now he attends regular club meetings and gives yearly addresses at Light it Up Blue, the club’s spring event which fundraises for Autism Speaks Inc. (ASI).

Morris said he was diagnosed with autism when he was two years old and did not speak until after his fifth birthday. According to him, speech therapy, listening and self-advocacy have helped him gain independence. He graduated College Internship Program (CIP), Berkshire, in 2009. Currently, he works three jobs and has lived alone in White Plains since last summer.

He said that being a part of the Fordham community through ASUFU has allowed him to make friends and build a greater sense of common understanding with respect to his autism.

“I think we learn a lot and we understand well, because before we had clubs we had no understanding, now we understand,” he said. “It’s better for us and the members.”

ASUFU engages in a combination of fundraising and event programming accessible to people of all abilities, according to the club’s president, Emily Bates, FCRH ’20.

Currently, the club is preparing for its annual Halloween party where it sets up about eight different stations and tables for food, crafts and trick-or-treating on Fordham’s campus. Bates said the club reaches out to Bronx community members who have children with autism and invite them onto campus.

“Trick-or-treating in the Bronx can be a challenge,” she said. “So if you have a child who doesn’t travel well, that’s an additional challenge but you obviously want them to experience American Halloween.”

According to Bates, in addition to the Halloween party, the club also puts on

Thanksgiving Bingo and Winter Wonderland which similarly use Fordham’s campus as a safe space for Bronx community members to come together.

The club also fundraises for ASI, which, according to Bates, has been criticized in emails, sometimes by individuals who say they are on the autism spectrum.

“[The emails say] what we think we’re doing is in good faith but [we’re] doing it wrong,” she said. “This is an organization that doesn’t actually support individuals with autism.”

Gina Rizzo, FCRH ’20, events chair at ASUFU said she tells people who criticize ASI that the corporation has changed. According to her, beginning in 2010, ASI tried to start changing its leadership, a transition that culminated in a new mission statement in 2016.

Katelyn Cody, FCRH ’20, said she has not affiliated herself with the club because she does not believe ASI benefits people with autism, although she said the club at Fordham has done some good things.

Cody is in Fordham’s five-year special education program and wants to be a special education teacher. She currently spends her Wednesdays as a teacher’s assistant working with children who are on the autism spectrum at the school her mother works at in her Connecticut hometown.

She said she objects to ASI’s leadership, which includes only two people with autism on a board of 27 individuals, according to the Austistic Self Advocacy Network (ASAN)

“I just think that’s really inappropriate for an organization that claims to be advocating for these people,” she said. “It shows that they don’t really have the right priorities in mind.”

Forbes quoted John Elder Robinson who is on the autism spectrum and the author of “Look Me In The Eye.” He said he had to stop working with ASI in 2013.

“Autism Speaks says it’s the advocacy group for people with autism and their families,” he said. “It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.”

Bates said ASI should better represent people on the autism spectrum in its leadership.

“That’s definitely something that needs to be improved upon,” she said.

Rizzo said she joined ASUFU because a Fordham friend whose brother is on the autism spectrum asked her to join with them. According to her, knowing someone else who is directly connected to the lived experience of autism was going to be a part of ASUFU was a big deal to her.

“To know that someone I know and respect, respects this company and likes the work they do and feels that it’s making a positive contribution to the community that they’re a part of and the people in their lives was important for me going into it,” she said.

Linda Yenicag, GSB ’20, ASUFU’s treasurer, said in an email to The Fordham Ram that there is a person on ASUFU’s executive board who is on the autism spectrum. She said the club is also benefited by Morris’s and the executive board member’s presence at their meetings.

“The insights shared by the referenced board member and our autism advocate tremendously influence the operations/logistics behind all our events and club decisions made by the executive board,” she said in the email.

Cody said she has researched ASI and has come to the conclusion that the organization is mainly focused on finding a cure for autism, which according to her is not what is needed.

“I feel like so much of their rhetoric is that autism is a disease and it’s not even close to being that,” she said.

According to ASI’s website, the word ‘cure’ was removed from its mission statement in 2016.

Diane Rodriguez, Ph.D., is a Fordham professor whose research focuses on the intersection of special education and bilingual studies. She said she was a special education teacher for 11 years and has been teaching special education and bilingual courses for 25 years.

According to Rodriguez, the discourse surrounding autism needs to change.

“People have to understand that autism is a developmental disability which affects the processing and integration and organization of information,” she said. “That doesn’t necessarily mean that they cannot function in society.”

She said autism is not a disease like cancer that is in need of a cure.

“It just significantly impacts their [ability to] communicate, or their social interaction, their functional skills or their educational performance,” she said. “So based on that, it’s not that’s it’s a disease, it’s just the ability to do things differently.”

Yenicag said she does not think ASI is mainly focused on finding a cure and thus eliminating autism.

“Autism Speaks is focused on advocating for individuals with autism and promoting a vast range of solutions/interventions to help individuals cope with/better manage the struggles they face related to their being on the spectrum, not finding a ‘cure,’” Yenicag said in the email.

Rodriguez said there are people who try to profit off of autism advocacy, whose true intentions do reflect a genuine desire to help autistic individuals. 

ASI’s board of directors include representatives of several major corporations including American Express, Samsung, Goldman Sachs and White Castle, according to ASAN. 

Bates, who works at the Albert Einstein College of Medicine in autism research, a place partly funded Autism Speaks, said she acknowledges there are flaws in ASI, but believes in the work she is doing. 

“I believe there is enough good in the organization for me to still pursue assisting them and helping them,” she said. “Is it perfect? not at all. I don’t necessarily look for perfection in everything I do.”

Rizzo said Cody and anyone else who similarly has been reticent to get involved should be present at one of ASUFU’s outreach events, which are free to attend and thus separate from ASI.

“Come,” she said. “Just see what we’re doing. You don’t have to support the corporation to just come to our events and be a part of our community.”

Morris said he is planning to attend this spring’s Light It Up Blue event.

“I go to [it] every year,” he said. “[It is an event] which I’m never gonna miss.”

At the event, which is intentionally planned during April, autism awareness month, Morris will give a speech as he has in the past.

“I speak about what I do and what’s good for presidents and board members and club members to understand autism in the community,” he said.

Morris said he hopes he will continue taking the train from White Plains to Fordham for the club meetings and events.

“I hope the club keeps it going and I like to oversee the club and I like it very, very much,” he said. “I also want to be a special overseer to this club because it’s good for the charity.”