Clara Washington speaks to what it’s like raising her 7-year-old daughter Jayla Morrison who has autism. Washington said although she’s had much support from AutismUp, she wishes more programs were available in the city of Rochester.
A group of Rochester researchers are working in collaboration with national partners to develop autism intervention strategies that aim to reduce income-based and race-based disparities in services for autistic children.
The Autism Intervention Research Network on Behavioral Health (AIR-B), is comprised of nine member sites, one being the University of Rochester Medical Center, which engage in projects designed to improve health services and outcomes for low-income families.
The most recent phase is a five-year study aimed at developing sustainable interventions for families through community partnerships.
Suzannah Iadarola is a pediatric psychologist and assistant professor of pediatrics at URMC who specializes in the diagnosis and treatment of Autism Spectrum Disorders. Iadarola, in collaboration with Tristram Smith and Lynne Levato, who also serve as investigators at URMC, is working in Rochester with families to help identify and implement practices to help close the gap.
“This is community partnered research so we sit down and have focus groups of people and look for common themes, and common needs, and common gaps,” said Iadarola. “We use those gaps to inform what kind of intervention development we do.”
Iadarola said two themes emerged during the preliminary needs assessments across the sites, which sparked two major spinoffs; Building Better Bridges and Mind the Gap.
Building Better Bridges (BBB) is predicated on making school-based transitions for children with ASD easier by implementing programs to help children adjust to their new environments when changing schools.
Iadarola said the transition from elementary school into secondary school, for example, tends to be a difficult time for autistic students, who are faced with a change in building, structure and expectations.
“The support becomes less individualized and there are more expectations as independence increases,” said Iadarola.
BBB is working to minimize the difficulties by helping families prepare their student for the transition, as well as preparing the school.
“It’s about helping the sending school disseminate important information about the student so the receiving school knows more about the student and feels better prepared to meet their needs in the new classroom,” said Iadarola. “It is very parent-mediated. Families are engaged with members of the research team with designated modules around what steps do they need to take to develop the relationship with the new school. It puts a lot of power in the feet of the family so they can drive this positive successful transition.”
The second program, Mind the Gap, is designed to help parents navigate a new diagnoisis of ASD.
“They feel very lost and confused about how to go about navigating the system, and sometimes confusion and inequitable dissemination of information to certain families and certain communities can result in delays in getting services,” said Iadarola. “We know early intervention services are critical for the long term positive outcomes of children with ASD, and so it is really critical that families get access to services as quickly as possible.”
Iadarola said that community feedback indicated that a lot of families have to figure out these things on their own and they wish they had somebody to help them through the process. Mind the gap is designed to help address that need, with a goal of bridging the gap in services through provision of information to families in a way that is easily accessible to them and easily understandable.
She also noted that community partnerships have been critical to help connect researchers with eligible families.
“The whole point (of community-partnered research) is that as a medical team we are not in all the spaces that we need to be. That is why we are doing the work in the first place,” said Iadarola. “That is why the partnerships are so very critical if we really want to make changes in inequitable access to services we have to work with the community and not just in our own silo.”
The research programs are still in the early stages of its 5-year cycle, but Iadarola said the long-term goal of the program is to develop interventions that are sustainable beyond the funding cycle.
“Both of these interventions, and AIR-B in general, are informed by ongoing community partnerships, so we have been getting a lot of input from community members, which includes family members of kids with ASD, teachers, representatives from community agencies and state representatives who have been working with us,” said Iadarola. “The hope is that these interventions, if successful, can be disseminated to our communities on a larger scale.”
►More: Rochester a magnet for families of children with autism, but disparities remain
►More: How a group of local moms created an autism support system for thousands
►More: Here’s a list of some resources for autism services and support
►More: 5 things you should know about Autism Spectrum Disorder
►More: UR researchers aim to close gap in autism services in low-income districts
Read or Share this story: https://on.rocne.ws/2LtuirO