From One Generation to the Next: Keeping Families Healthy

by Katherine Lewis

Autism’s Ambassador

When Stephen Shore was two years old, doctors recommended that his parents institutionalize him because his autism was so severe. “Fortunately, my parents repudiated the experts,” says Dr. Shore, now an assistant professor at Adelphi’s Ruth S. Ammon School of Education. “My parents implemented what today we would call an intensive home-based intervention program…My parents figured out what I needed and provided for my needs.”

Dr. Shore’s academic interests are focused on helping other children on the autism spectrum and their parents figure out the best program or approach for them out of the five primary approaches to autism treatment. “Because autism has such a wide spectrum, it stands to reason that different people will have different needs and benefit from different approaches,” he says. “There’s way too [many] people attempting to fit children into particular programs and approaches. Really, we should be fitting programs and approaches to the needs of the children.”

His research grows out of his dissertation, which involved in-depth personal interviews with the developers who pioneered each of the widely used approaches to autism. He concluded that proponents of the different approaches weren’t looking at each other’s successes and failures, and often followed similar procedures under different names.

In a study at a local special education school, Dr. Shore is comparing the progress of two classes of students with autism over the course of the school year, with one class following the Miller Method and the other using TEACCH (Treatment and Education of Autistic and Communication related handicapped CHildren). TEACCH focuses on making the environment and daily routine as structured and predictable as possible, while the Miller Method introduces varying amounts of order and disorder in order to teach children with autism to cope with the unpredictability of life. The results of that research will inform a broader study on the relative strengths and weaknesses of each approach, and how to match the approaches to children all along the autism spectrum.

“My goal is to use my personal, academic, and practical experiences to make life better for people on the autism spectrum,” Dr. Shore says. “In some ways, people have viewed me as an ambassador between the autism world and the non-autism world, being able to explain to one world what the other world might be doing or thinking.”

Coping with Stress Later in Life

When grandparents end up raising their grandchildren, their experience and health outcomes depend on their underlying personality, according to research by Francine Conway, an associate professor at Adelphi’s Gordon F. Derner Institute of Advanced Psychological Studies.

“The prevailing attitude has been, ‘These poor kids and these poor grandparents, and isn’t this terrible,’” Dr. Conway says. “I wanted to look at a more positive take on it. I was curious about the role that people’s personality disposition would play in not only the caregiving aspect, but in the health outcomes of the grandparents themselves.”

More pessimistic grandparents were more likely to report poor physical and psychological well-being, including depression, hypertension, and hostility. Those who were optimistic experienced better outcomes. Dr. Conway found, however, a non-linear relationship: those with moderate levels of pessimism turned out to have lower levels of hypertension and obsessive behavior than either the highly pessimistic or the minimally pessimistic study participants.

In a separate study, she looked at how 1,000 older adults in Brooklyn dealt with negative life events and how the coping mechanisms they employed were associated with their ethnic origin. The research found that American-born Caucasians were more likely to use distraction in response to interpersonal conflict, while European-born Caucasians acknowledged conflict and used emotion-focused coping patterns. African-Americans and Caribbean Americans were more likely to use denial and dismiss problems, an important finding when it comes to noncompliance with health recommendations.

Will You Still Feed Me When I’m 64?

A Singapore law allows indigent elderly people to sue their adult children for support. Philip Rozario, an associate professor at the School of Social Work, conducted a pilot study on the law’s impact during his sabbatical in spring 2010. He studied archival data of the law’s enactment, including parliamentary debate records and media coverage, in addition to in-depth interviews with professionals who work with the elderly.

Essentially, the law reinterpreted the notion of filial piety. “It makes an ancient cultural value relevant for modern day,” Dr. Rozario says, while also putting social workers into an ethical dilemma. “It required social workers to ensure that their older clients and families complied with the very strict eligibility requirements.”

Consequently, social workers tended to focus on the immediate problems of their clients, rather than wrestling with philosophical problems. He also found that the legislation legitimized the government’s decision to devote very limited amounts of resources to maintenance of older adults.

As a follow-up to the study, he would like to expand his interviews to the older adults who have taken action under the law and their children. “Often, older adults who are not doing well financially don’t have very rich children…I wonder if we are perpetuating the impoverishment of the younger generation,” he says.

In the United States, 30 states have laws on the books that permit lawsuits against adult children to cover an aging parent’s expenses. The primary difference is that the elder himself cannot sue the way he can in Singapore; typically the government or a third-party care provider brings the lawsuit, Dr. Rozario says.

Helping Victims of Stroke and Dementia Communicate

One of the biggest frustrations for caregivers of stroke patients is difficulty communicating. Robert Goldfarb, a professor of communication sciences and disorders in Adelphi’s Ruth S. Ammon School of Education, is training caregivers to use communication devices that let patients press a picture or symbol on the device to communicate. For instance, touching a picture of the house leads to a menu of different rooms, where the patient can select the bathroom to indicate the need to use the toilet. The devices are programmed specifically with the individual patient’s needs and environment in mind.

“It’s not to substitute for speech but to augment it,” Dr. Goldfarb says. “It takes away a lot of frustration on both parts.”

In understanding the mechanisms of stroke and brain function, it helps to bring in colleagues from other disciplines, he says. For instance, an oceanographer can help map regional cerebral blood flow. Such crossovers play into his interest in translational research. “You want to expedite the translation of scientific discovery into new and improved standards of care,” he says. “There’s no reason you couldn’t use findings from math to sociology.”

For instance, Dr. Goldfarb worked with a colleague who does acoustic research to investigate the condition of amusia, which develops after a stroke and manifests as damage to the abilities of a previously musical individual. They performed spectrographic analysis of archival recordings of James P. Johnson, the composer of the Charleston, playing stride piano before and after a series of strokes. “We found significant differences in his timing pre and post stroke,” he says. “We’re looking at a methodology for examining effects of this particular brain disorder.”

Parenting 101

Laura DeRose, an assistant professor at Adelphi’s Gordon F. Derner Institute of Advanced Psychological Studies, also hopes to bridge a communication gap: the one between children and their parents. In the “Raising a Thinking Child” project at Adelphi’s Institute for Parenting, which is directed by Marcy Safyer, families with preschool-age children spend eight weeks learning skills that they can practice with their children to become more creative problem solvers. The program is based on an interpersonal cognitive problemsolving program developed by Myrna Shure of Drexel University that’s been shown to be effective in decreasing negative behaviors in children longitudinally.

“We administer a number of measures with the parents before and after the program and three months later,” Dr. DeRose says. Researchers look at child behavior, mothers’ self-reported depression, and their observations of sensitivity, warmth, and positive encouragement. Preliminarily, the program appears to be associated with a reduction in some negative child behaviors, such as aggression, and the mothers’ level of depression.

A new project at the Institute for Parenting, funded by a two-year, $96,478 grant from the Pritchard Foundation, aims to work with 20 families in which abuse or other problems caused the Nassau County, New York, child welfare system to revoke parental custody. Under the program, children and their parents come to Adephi for six months of therapeutic supervised visitation. Therapists also work directly with the parents to improve their parenting skills.

“We very much focus on a relational approach. We work with the parents and children together,” Dr. DeRose says. It’s ideal for “the parent to be reunited with the child and have the child be involved in the treatment instead of telling the parent to go to a class, while not working on deeper issues together.”

Researchers will assess interactions and the attachment between parent and child as well as the child’s developmental characteristics. Their working hypothesis is that participation in the program will boost the positive parent-child interactions, decrease negative ones, and enhance the parents’ sensitivity to their children.

Dr. DeRose says she hopes her findings “will help parents and other caregivers better understand how to support and care for children during these developmentally sensitive periods.”