A coalition of Fordham professors, students, and administrators has come together around the goal of improving the lives of autistic people by changing the way they’re treated in American society.
It’s a long-brewing effort that made strides in November 2013 with a conference among Fordham researchers, educators, and representatives of advocacy groups from outside the University. Next up are more conferences, research, and efforts to change policies and attitudes surrounding the capabilities of autistic people and how they can best be helped.
“There’s still a great deal of misunderstanding of what the needs are of this population,” said Micki McGee, Ph.D., associate professor of sociology and one of the conference’s organizers. “You can’t easily generalize about their needs” because of the sheer diversity of capacities and challenges that are found among autistic people, she said.
The November conference was one of several events Fordham has held in recent years to encourage compassionate and respectful approaches to helping people who have autism, a developmental disorder that impairs communication and social interaction.
Understanding of autism has rapidly evolved in the last 20 years, noted Ann Higgins-D’Alessandro, Ph.D., professor of psychology and a key organizer of the conference. Today, in part because of better diagnoses, approximately one in 88 people are diagnosed with some form of autism, compared to one in 1,000 two decades ago.
Big changes to social policies are needed if those with autism are to live full and independent lives, according to the conference. Those changes include better assessments of autistic people’s needs and abilities; flexible, individualized supports that help the autistic develop their strengths and capacities throughout life; more supports for adolescents and adults with autism; and more public education to reduce bullying and stigma.
Also, the conference found, autistic people shouldn’t only have to seek services through the Americans With Disabilities Act, which frames autism as a medical condition and cuts off services at age 22. New social policies should offer guidelines about how society can reasonably accommodate the needs of autistic people throughout their lives and support the highest degree of independence possible for each of them.
“A medical model, a deficit model that just gives a diagnosis, is static, and says ‘this child can’t do this and probably when she’s older she won’t be able to do X,Y, and Z,” Higgins-D’Alessandro said. “We don’t know that. Autism is like a wild card. You can’t tell which kid is really going to be able to develop higher-level functioning with support. We just don’t know enough yet about the range of developmental paths autistic people can take as they grow older.”
The Nov. 8 conference, held at the Rose Hill campus, made preliminary recommendations that a strengths-based functional model should guide applied research, new practices, and policy.
Fordham professors, administrators, and graduate students worked together with outside educators, medical professionals, service providers, educators, and advocates for autistic people.
“It was really a major, major milestone,” said John Tognino, PCS ’75, trustee emeritus of the University, who co-sponsored the conference along with the Departments of Psychology and Sociology, Fordham’s Center for Community-Engaged Research, and Fordham College at Rose Hill.
“It was a great opportunity for everyone to talk to each other, in an attempt to overcome some of the silos that exist when you deal with research and you deal with some of these delicate scientific topics,” he said.
Among the panelists was Samantha Crane, public policy director for the Autistic Self Advocacy Network in Washington, D.C., which tries to ensure that autistic people are represented in all academic conference panels about autism.
“We’ve got a lot of people who follow a very clinical model that presumes that autistic people are subjects to be acted upon or studied, not necessarily sources of information or partners in research and advocacy,” said Crane, who, like all her organization’s senior staff, is autistic.
The conference’s organizers will meet this spring to finalize its recommendations so they can be circulated to advocacy groups, service groups, and government agencies, Higgins-D’Alessandro said.
Meanwhile, Fordham graduate students in psychology are forging ahead with projects that illuminate the needs and capabilities of autistic persons.
Amie Senland’s doctoral work challenged the perception that people on the autism spectrum generally lack empathy. While working with those who are high-functioning, she was able to show “the disconnect between how they perceive themselves as being caring and compassionate and their ability to implement that in solving everyday problems,” she said.
Doctoral candidate Xiaoming Liu is designing a study that will measure autistic children’s ability to shift their attention—a problem for many with autism—by having them choose the socially appropriate solution in a series of animated vignettes.
Another doctoral student, Amanda Leeder, plans to focus her dissertation on the role that non-autistic siblings can play in autistic children’s development. Also, as part of her practicum, she’s working with therapists at Emerge & See Education Center in Manhattan who are finding ways to teach autistic children basic conversation skills.
Progress comes in small increments, but those can sometimes make all the difference for autistic children later in life, she said.
“If you can help them get to a point where they can just be right above the threshold of employability, you’ve hit the jackpot,” she said.
Doctoral candidate Audra Olazabal, who conducted autism-related research for her master’s, said she has spoken to groups about starting support groups for autistic people within the Fordham community.
“If you could build a network of social support among people on the spectrum, it would create a more favorable atmosphere and culture—so that they wouldn’t feel so stigmatized,” she said.