UMass Autism Speaks chapter continues work despite organizational changes

By David Barnstone


Marina Simons is completing her senior honors thesis in autism research.

A senior communication disorders major at the University of Massachusetts, Simons is working to develop a tool to decode differences in the way children with high functioning autism tell stories compared to typically developing children. Over the next few months, she will use that tool to analyze recordings and transcriptions of children telling stories collected by her lab mates.

On the surface, there appears to be few differences between storytelling in children with and without autism. Previous studies have found that both groups of children, when matched on variables like age, gender and language ability, share stories similar in length and complexity. However, differences begin to emerge with more sophisticated narrative assessments.

A 2006 study conducted by scientists at the University of Rochester, for example, measured one aspect of storytelling that Simons is analyzing in her research project: coherence, or how well the story fits together as a whole. While an experimenter left the room, children listened to a recording of a story while following along in a wordless picture book. Then the children were asked to retell the story to the experimenter without looking at the book.

The Rochester researchers found that the retellings by the children with autism resembled more of a list of events than a narrative, compared to the children without autism. Simon plans to evaluate how children use transitional words to link together different parts of the story.

“Our goal is to figure out what is different so that hopefully in future therapies,” Simons said. “These are things that speech language pathologists can target and change so that [the children’s] voices and the way they talk and tell stories sound more like their peers.”

Through these speech therapies, Simons hopes to improve the quality of life for children with autism and their families. She says her brother, who has Down syndrome, is a “great communicator” because of the therapists who worked with him when he was a little boy.

“Therapies have come so far and I think that they can still be going so much further. And that’s what really needs to be done, in my opinion,” Simons said.

When people with autism were asked what types of studies they would like to see funded by research dollars, science writer Emily Willingham learned that they were interested in more educational opportunities and alternative communication tools being developed for the autistic community.

“What you won’t see on this list are desires for cure or prevention or identifying a cause, areas where most autism research focuses,” Willingham writes on her blog.

Autism Speaks, one of the largest and most visible advocacy and research organizations, funds “global biomedical research into the causes, prevention, treatments, and a possible cure for autism,” according to its mission statement. The organization’s research initiatives include Early Access to Care, Environmental Factors in Autism and Genetics and Genomics.

The New York-based nonprofit recently held its first policy summit, Autism Speaks to Washington, in November at George Washington University. The night before, Autism Speaks co-founder Suzanne Wright published a post on the organization’s website that has attracted negative attention from the disability rights world.

“We haven’t seen the urgency and the accountability that the government needs to do to face this crisis,” Wright said in an interview with MSNBC’s Andrea Mitchell. “Two percent of our boys are falling into autism. Can you imagine, Andrea, if two percent of our boys were being kidnapped in this country? It’s a national public health crisis.”

Peter Berns, CEO of a national intellectual and developmental disabilities organization, The Arc, criticized Wright’s remarks for undermining many people with autism “who, rather than seeking to be cured, are striving for their human rights to be accepted and respected.”

In a Jan. 6 public letter, 26 disability rights organizations, led by the Autistic Self Advocacy Network (ASAN), called on donors “to end your support of Autism Speaks and re-allocate your donations to a recipient who can better represent the needs and desires of autistic people and our families.” ASAN denounced Autism Speaks for funding a biased research agenda and excluding people with autism among the organization’s advisory board and senior leadership.

Until recently, Autism Speaks did have one person with an autism spectrum disorder on their Science and Treatment Boards. John Elder Robison, a bestselling author who writes and speaks about his experiences with Asperger’s Syndrome, announced his resignation from these positions in a letter to Autism Speaks president Liz Feld, which he published on his blog on Nov. 13.

“We have delivered very little value to autistic people, for the many millions raised,” Robison writes in the letter. “I cannot continue to stand up for the public actions of an organization that makes the same mistakes over and over again by failing to connect to the community it purports to represent.”

UMass students Daniel Harpaz and Stephanie Tufano jointly run the UMass Autism Speaks U chapter. Robison, originally from Amherst, came to UMass in April for a talk and book signing hosted by Harpaz and Tufano. Harpaz and Tufano said they understand Robison’s decision to leave the organization and they are “sorry that he’s chosen to part ways with us.” Nevertheless, they will continue with their fundraising and advocacy efforts. They said that much of Autism Speaks’ work focuses on those on the low functioning end of the spectrum.

“Individuals whose autism requires intensive treatment and intervention, people who cannot hold jobs, people who cannot even speak or take care of themselves – for those individuals, Autism Speaks is a lifeline,” Harpaz and Tufano said in a statement.

Simons said the huge amount of variation that exists along the spectrum puts Autism Speaks in a difficult place. The organization “is supposed to be speaking for both ends of the spectrum and everything in-between,” she said. “So they’re not in the easiest position.”

Autism Speaks continues its widespread work in Amherst and beyond. Its Walk Now for Autism Speaks events are popular across the country and collectively raised roughly $30 million in 2012. College students are involved in more than 60 Autism Speaks U groups. The UMass chapter will be holding its annual Autism Speaks 5K Run/3K Walk in April. The event brought in more than $15,000 in 2011, according to a Daily Collegian report last year.

David Barnstone can be reached at [email protected]